Podcasts about MDA

Not sure what Minimal Disease Activity or MDA is and how it relates to psoriatic arthritis and your joints? Listen as rheumatologist Dr. Arthur Mandelin explains what MDA means. Join hosts Jeff Brown and LB Herbert as they discuss minimal disease activity in psoriatic arthritis with nationally recognized rheumatologist Dr. Arthur Mandelin who identifies what it is, factors that influence achieving MDA, how long it takes to reach, and the impact on selection of treatments. Dr. Mandelin also addresses fatigue associated with inflammation, and what the future holds for minimal disease activity in psoriatic arthritis. Whether you have psoriasis or psoriatic arthritis, this episode offers information to help you understand management goals set by your doctor and the importance of attaining minimal disease activity. Timestamps: (00:00) Intro to Psound Bytes & guest welcome rheumatologist Dr. Arthur Mandelin (02:23) What is minimal disease activity (MDA) (04:32) MDA in comparison to ACR response criteria (07:36) Criteria for reaching MDA (09:20) Positive and negative factors of MDA (11:25) Importance of reaching MDA within a specific time frame (17:34) Length of time to reach MDA (18:48) Selection of treatment options and psoriatic arthritis domains (23:51) Inflammation and fatigue (26:59) A look at the future of minimal disease activity in psoriatic arthritis: Reaching ACR 90 (29:09) Advancements in psoriatic arthritis: Finding disease markers (33:40 ) If you have psoriasis, be aware of your risk for psoriatic arthritis 4 Key Takeaways: There are various ways to measure minimal disease activity in psoriatic arthritis to assess how the disease impacts quality of life.   Attaining and keeping minimal disease activity low through use of different therapy options offers a chance for better bone and joint outcomes. Advancements in psoriatic arthritis include attaining ACR90 and the potential for identifying key markers that make treatment selection more targeted and individualized. Those who have psoriasis need to realize bone and joint pain, and swelling in the joints may be related to their psoriatic skin disease and seek appropriate help.  Guest Bio: Dr. Arthur Mandelin is an Associate Professor of Medicine at Northwestern University Feinberg School of Medicine and the Department of Medicine Division of Rheumatology. Dr. Mandelin launched Northwestern University's first training program in musculoskeletal ultrasonography for rheumatology fellows. He is an active participant in the REASON Group which is a multi-center research collaboration devoted to using ultrasound guidance to obtain minimally invasive synovial tissue biopsies. Dr. Mandelin is a past member of the National Psoriasis Foundation's Medical Board where he served on consensus panels for the development of a variety of practice guidelines.  Resources Mentioned: National Psoriasis Foundation: https://www.psoriasis.org PEST Screener: https://www.psoriasis.org/psoriatic-arthritis-screening-test/ PsA Action Month 2025: https://www.psoriasis.org/psa-action-month/ NSAIDS  for Psoriatic Disease: https://www.psoriasis.org/advance/nsaids-for-psoriatic-disease-psa/ AMP (Accelerated Medicines Partnership): https://www.psoriasis.org/advance/progress-and-success- through-collaboration/  Tags: psoriasis, skin, psoriatic arthritis, minimal disease activity, ACR20, ACR50, ACR70, tender joints, bone erosion, joint swelling, enthesitis, inflammation, pain, fatigue, axial disease, spinal involvement, treatment, NSAIDS, biologics, personalized medicine, dermatology, National Psoriasis Foundation, AMP, Psound Bytes podcast, Soundbites podcast

Interview réalisée au studio de la radio de l'UTL par Eliane PérusTrois membres de la troupe NOVAIA ont participé à l'interview :- Jean-Robert MEYER, fondateur de la troupe, comédien, auteur et metteur en scène- Mélissa RONDELLO, comédienne, chargée des relations publiques- Pierre RICARDOU, comédienTroupe fondée en 2012 (le 8 mars), ouverte à tous.Jean-Robert MEYER nous présente le fonctionnement de NOVAIA : objectifs, thématiques, les choix d'auteurs, écriture collégiale, ateliers, promotion de nouveaux artistes etc  ......A découvrir..Deux spectacles écrits par Jean-Robert MEYER seront proposés le 10 mai à 20h15 à la MDA du Quai de l'Adour :- " Ne l'appelez plus Nina"- "Les gagnants du loto"Réservation conseillée.Extraits musicaux que vous entendrez durant le podcast :1/ "A l'avenir" SHEILA2/ “En rouge et noir” Jeanne MAS3/ “Give me a sign” Ofra HAZAConsultez la page des PODCASTS de l'UTL-TB : https://www.utl-tb.info/page/2238064-rubriques-radioHébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Today on part one of the Rarified Heir Podcast we are talking to Howard Murray, son of comedian and actor Jan Murray. Our conversation with Howard was wide ranging and fun with a few poignant moments we did not see coming. Howard was an effusive and eager guest who really seemed to enjoy talking about his parents and how wonderful they were. This is something we already knew and we get to that when host Josh Mills tells a story about Howard's mother, Toni Murray that we've never told before. Our conversation often harkens back to Howard's beloved early years in Rye, New York when his father was known for his Borscht Belt years in the Catskills mountains entertaining Jewish vacationers, his years on radio and the early years on television in New York City, not far from his hometown of the Bronx. We talk game shows Jan Murray hosted and sometimes created, meeting ‘uncle' Jerry Lewis at his MDA telethon on stage and hearing first hand tales about comics like Sid Caesar, Shecky Greene, Harry Ritz, Buddy Hackett and more. This is the Rarified Heir Podcast and there is nothing like hearing about growing up a child of a celebrity, when your father is as terrific as Jan Murray clearly was. (And Toni Murray wasn't chopped liver either)….and this is just part one.

Send us a textBart Vale Career Deep Dive Ep 273Bart Vale is considered to be one of the few Americans to be on the ground floor of the Japan MMA explosion. Bart Vale takes us through his time with New Japan Pro Wrestling (NJPW) which include a famous confrontation with Ken Shamrock. BIG thank you to William Colosimo who helped us with understanding a time period that is largely undocumented. Bart Vale Career Deep Dive Ep 273  0:00 plugs/ promotions 0:42 Lytes out intro 1:14 Joey Venti's guest introduction1:39 interview start 2:17 beginnings in Martial arts 3:24 Frank Dux 4:29 Rob Van Clief 5:00 moving to Japan to train 10:52 lying about age to seem younger 11:50 issues with Ed Parker 16:06 UWF closing down due to argument 18:40 becoming tired of living in Japan 19:34 closed door fight rumor with Kimura20:40 training with the Machado's 23:50 experience with Soranaka24:27 Karl Gotch fight story 27:02 experience with Gene LeBell 29:11 almost no showing MDA event 31:27 current life 32:39 owning the term “Shoot Fighting” 32:53 underground fights being a shoot 38:28 Pride FC roots 42:12 bringing Ken Shamrock to train 46:52 difficulty dealing with Ken Shamrock 50:04 Ken Shamrock lying about using steroids 51:24 Shoot wrestling match with Ken Shamrock56:04 Mafia involvement in the fight business 57:28 Road Warriors story 58:35 Corporal Kirchner getting arrested 1:00:55 interview with William Collasium 1:01:55 Shoot Fighting Florida1:05:22 dealing with Marcus Marinelli1:11:10 Suzuki and Funaki left Fujiwara and started Pancrase1:13:58 World Combat Championships1:18:21 inviting Jerry Flynn to fight on WCC card 1:19:40 Erik Paulson vs James Warring 1:21:00 experience with Manager Max Coates1:22:56 experience with John Perretti 1:24:23 Bart Vale vs Dan Severn 1:26:49 Don the dragon Wilson 1:27:10 bodyguard for Michael Jackson 1:30:06 Julio Iglesias1:30:50 interview wrap up 1:31:06 outro/ closing thoughts Subscribe to the Lytes Out Podcast:https://www.youtube.com/@MMAHistoryPodcastDiscord:https://discord.gg/s3mV6wyNgvSocials: Facebook -https://www.facebook.com/groups/1027449255187255/?mibextid=oMANbwInstagram - https://www.instagram.com/lytesoutpodcast/iTunes - https://podcasts.apple.com/us/podcast/lytes-out-podcast/id1568575809 Spotify - https://open.spotify.com/show/3q8KsfqrSQSjkdPLkdtNWb Mike - The MMA Detective - @mikedavis632 Cash App - $mikedavis1231Venmo - Mike-Davis-63ZELLE: Cutthroatmma@gmail.com / ph#: 773-491-5052 Follow the #LOP team on Instagram: Chris Lytle - Founder/Owner - @chrislightsoutlytle Mike Davis - MMA Detective - @mikedavis632 Joey Venti - Assistant - @aj_ventitreTyson Green - Producer - @ty.green.weldingAndrew Mendoza - Timestamps - @ambidexstressAndy Campbell - Social Media Manager - @martial_mindset_Josh Campbell - ContributerJohn Perretti - Historical ContributerOutro song: Power - https://tunetank.com/t/2gji/1458-power#MMA #UFC #NHB #LytesOutPodcast #LytesOut #MixedMartialArts #ChrisLytle #MMADetective #MikeDavis #MMAHistory #OldSchoolMMA #FiftyFightClub #MMAPodcast #FightPodcastSupport the show

From quiet questions to Capitol Hill calls: Discover how any voice can ignite disability advocacy. In this episode of the Water Prairie Chronicles, host Tonya Wollum welcomes back Ally Pack-Adair, a passionate advocate and ambassador for the MDA.

Moms Demand Action is one of the most active and viral anti-gun groups in America. They regularly lobby, march, and demand that you give up your guns to make our country “safer.” Today's guest is not having it. She is tired of MDA presuming to speak for all women and mothers, and she is telling a very different story about our Second Amendment rights. -----⭐ SPONSOR: Good Ranchers Good Ranchers offers 100% American meat, protecting you from tariff-related price increases and their vacuum-sealed, individually wrapped cuts reduce food waste, saving families an average of $500 a year.

In this episode of the PCOS Repair Podcast, you'll discover how targeted nutritional supplementation can help reduce oxidative stress and improve hormone and metabolic function in women with PCOS. This discussion is based on a recent research article titled The Effects of Nutritional Supplementation on Oxidative Stress and Hormonal and Lipid Profiles in a PCOS-Affected Female. If you've been wondering whether certain nutrients—like vitamin D or omega-3s—can actually help with PCOS symptoms, this episode breaks it down in a practical and research-backed way.Oxidative Stress and PCOSOxidative stress is a type of internal cellular stress caused by an imbalance between free radicals and antioxidants in the body. It's not the kind of stress you feel emotionally, but rather the kind that leads to cellular damage and accelerates aging. In PCOS, oxidative stress is particularly concerning because it contributes to insulin resistance, increased androgens, chronic inflammation, and even fertility issues. It can also impair egg quality and affect ovulation, adding another layer of complexity for women trying to conceive.Oxidative Stress Biomarkers (Labs)This research highlights a few key biomarkers to assess oxidative stress levels, including malondialdehyde (MDA), total antioxidant capacity (TAC), glutathione (GSH), and nitric oxide (NO). Each of these indicators can help reveal the degree of oxidative damage in the body and how effectively your systems are working to counteract it. In women with PCOS, these markers are often out of balance, showing both elevated oxidative damage and diminished antioxidant defense.Supplements That Help Reduce Oxidative StressThis episode explores several key nutrients that play a powerful role in reducing oxidative stress for women with PCOS. These nutrients help lower inflammation, support metabolic function, and improve insulin sensitivity—all of which are essential for hormone balance. Some have been shown to lower testosterone levels and enhance the body's ability to manage blood sugar, while others support thyroid health and overall inflammation regulation. Some nutrients promote gut health, which is closely tied to hormone regulation, and even those that support better sleep while offering antioxidant benefits that may positively influence fertility. One of the most exciting findings from this study is the suggestion that certain nutrients can influence how genes express themselves. Some support IGF-1 levels, which are important for egg development and ovulation, while others impact insulin sensitivity through specific genetic pathways. There's also evidence that certain nutrients may reduce the expression of genes involved in chronic inflammation. While more research is needed, this emerging science highlights the potential for nutrition to make meaningful changes at a cellular level.Supplements in Your PCOS StrategyNo one supplement will fix PCOS, but using the right nutrients can significantly reduce oxidative stress and improve hormone function. As always, quality matters. Choose third-party tested brands and remember that supplements should complement, not replace, lifestyle interventions.If you're looking for trusted supplement recommendations, you can download the free PCOS The Supplement Guide. I've included a list of high-quality brands and tips for getting started. Improving oxidative stress through nutrition is a powerful tool for managing PCOS. From fertility to energy levels to long-term hormone balance, this episode offers a fresh perspective on what's possible with the right support.You can take the quiz to discover your root cause here.

DNS DPG is thrilled to introduce you to our current chair, Nikki Kendrick, MDA, RDN, CNSC and incoming chair, Beth Peterson, MS, RD, CSO, LDN, CNSC. We have a unique opportunity to sit down and reflect on the current program year and look ahead at upcoming opportunities. This episode was recorded on 3/4/25 and was hosted by Christina Rollins, MBA, MS, RDN, LDN, FAND, CNSC.

Prepare seu navio pirata ou sua nuvem voadora, pois desta vez no ⁠⁠⁠⁠⁠⁠⁠Mundo dos Animes⁠⁠⁠⁠⁠⁠⁠, ⁠Raul⁠, ⁠⁠⁠⁠Bruno⁠⁠⁠⁠⁠, Ansem, Vulpixs e Valente ⁠⁠⁠⁠ comentarão detalhes da produção do especial MDA no Isekai: O Bruxo e o Poço dos Desejos.SEJA NOSSO APOIADOR E AJUDE O PODCAST A CONTINUAR EXISTINDO: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Catarse⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Mande um e-mail para nossa Caixa Postal comentando sobre o episódio:podcast@mundodosanimes.comTempo de duração: 58 minutosE-mails: Raul Lima / Bruno RezendeArte da Vitrine: Lucas MáximoPauta: Raul LimaEdição: Lucas MáximoCreditos Trilha Sonora:⁠ Miura Jam⁠⁠⁠⁠⁠⁠⁠⁠VISITE O SITE DO MUNDO DOS ANIMES⁠⁠⁠⁠⁠⁠⁠Redes Sociais:⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Discord

Markets hate uncertainty, and it’s showing. We break down the recent volatility, from the steep drawdowns in the Nasdaq and S&P 500 to the tariff-fueled market jitters. We also discuss why knowing what you own and being diversified is so important when markets are volatile. We also talk about how the recent volatility is creating opportunities for investors with capital to deploy. We highlight stocks on our radar, including TFII, CP, Nvidia, American Express, Costco, and Amazon, and discuss what makes them interesting at these levels. Plus, why sometimes market moves have a clear reason—like tariffs or earnings surprises—and sometimes, why the reason is not as obvious. Tickets of stocks/ETFs discussed: TFII.TO, CP.TO, NVDA, AXP, COST, AMZN, MDA.TO, TMO, QXO, KSI.TO, EQB.TO, NET Check out our portfolio by going to Jointci.com Our Website Canadian Investor Podcast Network Twitter: @cdn_investing Simon’s twitter: @Fiat_Iceberg Braden’s twitter: @BradoCapital Dan’s Twitter: @stocktrades_ca Want to learn more about Real Estate Investing? Check out the Canadian Real Estate Investor Podcast! Apple Podcast - The Canadian Real Estate Investor Spotify - The Canadian Real Estate Investor Web player - The Canadian Real Estate Investor Asset Allocation ETFs | BMO Global Asset Management Sign up for Finchat.io for free to get easy access to global stock coverage and powerful AI investing tools. Register for EQ Bank, the seamless digital banking experience with better rates and no nonsense.See omnystudio.com/listener for privacy information.

Μία συζήτηση με τη Διευθύντρια του MDA Hellas κα. Αντιγόνη Καρρά, για το ντοκιμαντέρ «Sexability: Μία Ιστορία για τη Μυϊκή Δυστροφία Duchenne και τον Έρωτα» με την ευκαιρία της προβολής του στο Φεστιβάλ Ντοκιμαντέρ Θεσσαλονίκης στο τμήμα «Ανοιχτοί Ορίζοντες». Η πρεμιέρα θα πραγματοποιηθεί την Δευτέρα 10 Μαρτίου στις 17.00 στην αίθουσα Αίθουσα Φρίντα Λιάππα, Αποθήκη Δ, Λιμάνι και online στη διαδικτυακή πλατφόρμα του Φεστιβάλ από τις 11 Μαρτίου στις 10:00 π.μ. και έως το τέλος του Φεστιβάλ ή την εξάντληση των 500 θεάσεων.Sexability: Μια ιστορία για τη Μυική Δυστροφία Duchenne και τον Έρωτα - Λίγο λόγια για το ντοκιμαντέρΤο ντοκιμαντέρ επιχειρεί να προσεγγίσει με ειλικρίνεια ένα θέμα που ακόμη θεωρείται τολμηρό: το σεξ και η αναπηρία. Η αρχική ιδέα γεννήθηκε από το MDA Ελλάς, με στόχο να ενημερώσει το κοινό για την νευρομυϊκή πάθηση Duchenne, και να αναδείξει την πραγματικότητα των ατόμων με Duchenne πέρα από την ιατρική της διάσταση, εστιάζοντας στη συναισθηματική και ερωτική τους ζωή. Το Sexability επιχειρεί να προσεγγίσει με ευθύτητα και χωρίς ταμπού τη σεξουαλική ζωή των ανάπηρων ατόμων, καθώς και να αποδομήσει στερεότυπα για την Duchenne και την αναπηρία εν γένει.Το ντοκιμαντέρ παρακολουθεί τη ζωή του Πάνου, Μέλους του MDA, ασθενή με Μυϊκή Δυστροφία Duchenne, και εστιάζει στην αναζήτηση του έρωτα, και την σχέση αναπηρίας και σεξ. Ανάμεσα στις προσωπικές του αφηγήσεις, αλλά κι αυτές της οικογένειάς του, παρεμβαίνει ο Μαρίνος, ο οποίος είναι επίσης Μέλος του MDA με Duchenne, με μία διαφορετική προσέγγιση περί έρωτα. Στο ντοκιμαντερ συμμετέχουν επαγγελματίες ειδικοί στην πάθηση, καθώς και ο πρωτοπόρος σεξουαλικός βοηθός Δημήτρης Ζώρζος.Το Sexability κάνει την Διεθνή Πρεμιέρα του στο Φεστιβάλ Θεσσαλονίκης, επιδιώκοντας να ανοίξει έναν ουσιαστικό διάλογο γύρω από την αναπηρία και το δικαίωμα στην αγάπη καθώς και τη σεξουαλική ελευθερία.ΣυντελεστέςΙδέα - Παραγωγή: MDA HellasΣκηνοθεσία: Δημήτρης ΖιβόπουλοςΑρχισυνταξία - Σενάριο: Μελπομένη ΜαραγκίδουΜοντάζ - Σενάριο: Σοφία ΣφυρήΠρωτότυπη Μουσική: Αντώνης Χατζηκωνσταντής - Βασίλης ΖαμπίκοςΤίτλοι Αρχής/Graphic Design/Αφίσα: Παναγιώτης ΠαρνασσάςΤι ειναι η Μυϊκή Δυστροφία DuchenneΗ Μυϊκή Δυστροφία Duchenne (DMD) είναι μια γενετική ασθένεια που επηρεάζει κατά μέσο όρο 1 στα 5.000 νεογέννητα αγόρια σε όλο τον κόσμο. Προκαλείται από σφάλματα στο γονίδιο της δυστροφίνης, το μακρύτερο γονίδιο στο ανθρώπινο σώμα. Τα αγόρια με DMD χάνουν σταδιακά την κινητικότητά τους, ενώ στην εφηβεία, η ασθένεια επηρεάζει τους μύες της καρδιάς και του αναπνευστικού συστήματος. Τα τελευταία χρόνια, η έρευνα έχει κάνει άλματα, δίνοντας ελπίδες στα αγόρια και τις οικογένειές τους.Λίγα λόγια για το MDA ΕλλάςΤο MDA Ελλάς ιδρύθηκε στην Αθήνα τον Ιανουάριο του 2000, με σκοπό να βελτιώσει τις συνθήκες διαβίωσης των Μελών του. Καταστατικός σκοπός του MDA είναι να προσφέρει στα Μέλη του, νέοι στην πλειοψηφία τους, δυνατότητες για την καλύτερη ένταξή τους και την ισότιμη συμμετοχή τους στην κοινωνία.Οι Νευρομυϊκές Παθήσεις αφορούν σε παθήσεις, γενετικής κυρίως προέλευσης, που πλήττουν το μυϊκό σύστημα. Η σοβαρότητα και η κλινική εικόνα μεταξύ των παθήσεων διαφέρει. Πολλές οδηγούν στη χρήση αναπηρικού αμαξιδίου ενώ άλλες όχι. Σήμερα στο MDA Ελλάς είναι εγγεγραμμένες πανελλαδικά πάνω από 1700 οικογένειες, κάποιες εκ των οποίων έχουν πλέον του ενός Μέλους που ασθενεί. Οι δράσεις του MDA Ελλάς υλοποιούνται χάρη στην ευαισθητοποίηση της ιδιωτικής πρωτοβουλίας. Για περισσότερες πληροφορίες: www.mdahellas.gr

Susanna Doyle from MDA talks about her approach to connecting and communicating with nonprofit donors.

Exploiting the poker strategy of GTO vs PTO at low stakes cash games. Notes are below. Fans of the Pod get ad free, fluff free episode every single Sunday: https://lowlimitcashgames.com Save 10% when you choose the annual option Targeted Low Stakes poker training with hundreds of hours of audio and video teaching exclusively how to crush 1/2 and 1/3 no limit: https://lowlimitcashgames.com Save 10% when you choose the annual option. Hate AK? How to Play AK Master Class For only $49 get this 88 minute training video of me showing you exactly how to play AK, particularly when out of position. https://www.patreon.com/lowlim... The best way to ramp your game up and know how to play any hand in any spot by drilling it over and over again. This is the only product I endorses. Make sure to use my code for a 25% discount at checkout: https://advancedpokertraining.... Use code: lowlimit Want more details on everything that is offered with the training package on Patreon? I go into great detail about it all here: https://podcasts.apple.com/us/... GTO or PTO? GTO - game theory optimal. Learning how to play in such a way that nobody can exploit you. Downsides. Most people that try to learn it don't. Because it's very hard. And even those that come close don't understand how to deviate to exploit others. So they are winning the minimum most of the time. PTO - Population Theory Optimal or Pool Theory Optimal. Learning the habits and tendencies of the pool of players you play in and creating strategies against them as a group and individually to maximally exploit them. Downsides: if any of them ever smarten up and decided to exploit you getting out of line they could wreck you. This just isn't going to happen at 1/2 or 1/3 stakes. And if anyone is capable of doing it you will know who they are very quickly and not fall prey to that. Online coaching gurus are doing this with databases bought or collected from online play. It's called mass data analysis or MDA. In live play you don't have a database other than the one you collect in your brain by playing. So you can't get it by either playing for many many years. Or by being taught by someone who has.

Rare condition research is evolving, and patient communities are driving the breakthrough. In this special Rare Disease Day episode, we explore the challenges and opportunities shaping the future of rare condition therapies. From groundbreaking gene therapy trials to the power of patient-driven research, our guests discuss how collaboration between families, clinicians, researchers, and regulators is paving the way for faster diagnoses, equitable access to treatments, and innovative approaches like nucleic acid therapies and CRISPR gene editing. With insights from Myotubular Trust, we follow the journey of family-led patient communities and their impact on advancing gene therapy for myotubular myopathy - showcasing how lived experience is shaping the future of medicine. However, while patient-driven initiatives have led to incredible progress, not every family has the time, resources, or networks to lead these research efforts. Our guests discuss initiatives like the UK Platform for Nucleic Acid Therapies (UPNAT), which aims to streamline the development of innovative treatments and ensure equitable access for everyone impacted by rare conditions. Our host Dr Ana Lisa Tavares, Clinical lead for rare disease at Genomics England, is joined by Meriel McEntagart, Clinical lead for rare disease technologies at Genomics England, Anne Lennox, Founder and CEO of Myotubular Trust and Dr Carlo Rinaldi, Professor of Molecular and Translational Neuroscience at University of Oxford. "My dream is in 5 to 10 years time, an individual with a rare disease is identified in the clinic, perhaps even before symptoms have manifested. And at that exact time, the day of the diagnosis becomes also a day of hope, in a way, where immediately the researcher that sent the genetics lab flags that specific variant or specific mutations. We know exactly which is the best genetic therapy to go after." You can download the transcript, or read it below. Ana Lisa: Welcome to Behind the Genes.    [Music plays]  Anne: What we've understood is that the knowledge and experience of families and patients is even more vital than we've all been going on about for a long time. Because the issue of there being a liver complication in myotubular myopathy has been hiding in plain sight all this time, because if you asked any family, they would tell you, “Yes, my son has had the odd liver result.”  There were some very serious liver complications but everybody thought that was a minor issue, but if we are able to engage the people who live with the disease and the people who observe the disease at a much more fundamental level we may be able to see more about what these rare genes are doing.  [Music plays]  Ana Lisa: My name is Ana Lisa Tavares, I'm Clinical Lead for Rare Disease research at Genomics England and your host for this episode of Behind the Genes. Today I'm joined by Anne Lennox, Founder and CEO of the Myotubular Trust, Dr Meriel McEntagart, an NHS consultant and Clinical Lead for Rare Disease Technologies at Genomics England, and Dr Carlo Rinaldi, Professor of Molecular and Translational Neuroscience at the University of Oxford.    Today we'll be hearing about the importance of involving the patient community, particularly as new rare therapies are developed, and discussing the forward-facing work that's happening that could have potential to unlock novel treatments for many rare conditions.  If you enjoy today's episode we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. Thank you so much for joining me today.  Please could you introduce yourselves.   Anne: I'm Anne Lennox, I'm one of the founders of the Myotubular Trust, a charity that raises research funds for and supports families affected by the rare genetic neuromuscular disorder myotubular myopathy.  Meriel: I'm Meriel McEntagart, I'm a consultant in clinical genetics in the NHS and I have a special interest in neurogenic and neuromuscular conditions.  Carlo: Hi, I'm Carlo Rinaldi, I'm Professor of Molecular and Translational Neuroscience at the University of Oxford. I'm a clinician scientist juggling my time between the clinic and the lab where we try to understand mechanisms of diseases to develop treatments for these conditions.  And I'm also here as a representative of the UK Platform for Nucleic Acid Therapies, UPNAT. Thanks for your invitation, I'm very pleased to be here.  Ana Lisa: Thank you. Meriel, I'd love you to tell us a bit about your work and how you met Anne, how did this story start?  Meriel: Thank you. Well prior to being a consultant in clinical genetics, I spent 2 years as a clinical research fellow in neuromuscular conditions, and as part of that training I worked on a project where the gene for myotubular myopathy had just been identified, and so there was a big international effort to try and come up with sort of a registry of all the genetic variants that had been found as well as all the clinical symptoms that the affected patients had, and then do kind of a correlation of the particular variant mutation with symptoms.   I worked when I was training to be a clinical geneticist because of my interest in neuromuscular conditions so when I eventually became a consultant at St George's Hospital I was actually interviewed by the Professor of Paediatrics and he knew Anne and her son, when Anne was looking for more information about the condition he suggested that perhaps I might be a good person for Anne to talk to.  Ana Lisa: Thank you. Interesting connections. Anne, can you tell us your story and how this led you to found the Myotubular Trust?  Anne: Yes, thanks Ana-Lisa.  Well, as many families will tell you when they're newly diagnosed with a rare disease, you go from knowing nothing about a condition to being one of the few deep experts in that condition because there are so few deep experts. So this happened to us in 2003 when our son, Tom, was born, and when he was born he was floppy and his Apgar scores, the scores they do on new-born babies, were pretty poor, and before long we knew that it was more than just momentary issues at birth.  And, cutting a very long story short, 5 weeks later he was diagnosed with this very rare neuromuscular genetic disorder that we didn't know we had in the family.  We were told that this was a very serious diagnosis.    At that time – more than 20 years ago – over 80% of those boys didn't make it to their first birthday and the stark statistic we had in our head a lot was that only 1% made it past the age of 10. And that has changed due to better ventilator and breathing equipment, etc, but at the time we expected that he might not make it to his first birthday.    We were very lucky, we had Tom longer than one year, we had him for nearly 4 years, 4 very lovely years where it was tough, but he was a really lovely member of our family.  Despite being really weak he managed to be incredibly cheeky and bossy, and he was a great little brother for his big sister. We were also very lucky that he was being looked after by Professor Francesco Muntoni, who is Head of the Paediatric Neuromuscular Service at Great Ormond Street. And, like Carlo, he is a clinical researcher and actually that I found to be amazing as a family member because you knew what was happening out there and Professor Muntoni, other than living with the reality day to day you want to know where things are going.    We began to realise that back then 20 years ago the more common rare neuromuscular diseases were finally beginning to get some fundamental research funds, like Duchenne, spinal muscular atrophy, and Professor Muntoni was very good at explaining to lay non-scientific parents like us that one day the technologies that would lead to a cure, that would re-engage proteins for other conditions and would translate down eventually into the possibility of replacing myotubularin, which is the protein not being produced or not being produced enough in myotubular myopathy. And then we began to understand actually what the barriers to that would be, that translating developments in more common, or let's say more prevalent conditions, would be hard to do without some translation research being done; you could not just not lag years behind, you could lag decades behind if you haven't done some other work.    So, I met Wendy Hughes, another mother, of a boy called Zak who was a few years older than Tom, and these were the days before social media, and it was amazing to be in contact with another family going through something similar and we had great conversations. But then they were also looked after by Professor Muntoni and we particularly began to develop the idea as 2 families that we might be able to raise some research funds towards this concept of keeping pace with the scientific developments.  And then we discovered there was no charity we could channel those funds through. Even the umbrella body for neuromuscular diseases who were covering 30 to 40 conditions, frankly, they just couldn't trickle their funding down into investing in every neuromuscular disease, and slowly but surely it dawned on us that if we did want to make that difference we were going to have to set up our own charity.   So that's what we eventually did and back in 2006, we founded what was actually the first charity in Europe dedicated to myotubular myopathy – luckily, more have come along since – and we were dedicated to raising research funding. In fact, it wasn't our goal to set up another charity but around that time, about a year in, we happened to go to a meeting where the Head of the MRC, the Medical Research Council, was giving a talk and he said that in the last few years the MRC had begun to really realise that they couldn't cure everything, that they couldn't cure the diseases that would be cured in the next millennium from a top down perspective. There had to be a trick, there had to be a bottom up as well, because that was the only way this was going to happen. And I have to say that that was a really reassuring moment in time for us to realise that we weren't just chasing pipe dreams and trying to do something impossible, that there was a role for us.    Ana Lisa: I think it would be really interesting for people to hear your story and the amazing set-up and fundraising that you've done, and at the same time it would be really good for us to reflect on how this isn't feasible for every patient and every family and how we're going to need to work cooperatively to move forwards with rare therapies.  Anne: When we explored the idea with Professor Muntoni and Meriel and others about setting up a charity one of the really reassuring things that Professor Muntoni got across to us was that this wasn't about raising the millions and millions it would take to fund clinical trials but the issue in the rare disease space was funding the proof of principle work, the work where you take a scientist's hypothesis and take it over the line, and the rarer the disease, the less places there are for a scientist to take those ideas. And the example he gave us was a piece of research like that might cost a hundred to a couple of hundred thousand, if you fund a piece of work like that and if it is successful, if the scientist's principle gets proven, then behind you it's much easier for the bigger muscle disease charities to also invest in it. It's harder for them to spread their money across all the very rare diseases hypothesis out there, but if you've helped a scientist get over the line they'll come in behind you and then they won't be the ones who fund the tens of millions that it takes to run a clinical trial.    If it's got potential, then that's where the commercial world comes in, and that's where the biotechs come in. So he'd given the example of if you spent £ten0,000 on a piece of research and it actually is proven, in behind you will come the bigger charities that would put in the million that takes it to the next phase, and in behind them will come the bio-checks that'll provide biotechs that'll provide the tens of millions.    And then, you know, a lot of what happens relies on serendipity as well, we know that, and you could easily run away with the idea that you made everything happen but you don't, you stand on the shoulders of others. And our very first grant application in our first grant round, which received extraordinary peer review for how excellent the application was, was a £100,000 project for a 3-year project that had gene therapy at the core of it by a researcher called Dr Ana Buj Bello at Généthon in Paris. This piece of research was so promising that 18 months in she and another researcher were able to raise $780,000 and, as Professor Muntoni predicted, from the French muscle disease charity AFM and the American muscle diseases charity MDA.  And 18 months into that 3 years it was so promising that a biotech company was started up with $30 million funding, literally just on her work.    So that doesn't always happen but, as Professor Muntoni explained, our job was not that $30 million, our job was that first £100,000, and our job was also to make ourselves known to the people in the neuromuscular field.  If you have lab time, if you have research time and you have a choice where you're putting it there is a place you can go to for a myotubular myopathy related grant application, so it's not just that this will come to us out of the blue, people will have done prior work, and our existence makes it worth their while, hopefully, to have done that prior work.  Ana Lisa: That's an amazing story how you've set up this charity and how successful that first application for gene therapy was. I'd love to hear more about that gene therapy and did it get to the clinic and to hear that story from you.  Because I think there are a lot of learnings and it's really important that the first patients who are treated, the first families that are involved, the researchers who start researching in this area, the first treatments lead the way and we learn for all the other treatments for all the other rare conditions that we hope and that together as a community we can share these learnings.  Anne: Yeah. I sometimes describe it a bit like going out into space. When you see a rocket going off look at how many people are behind and the amount of work that's been done, the degree of detail that's managed, and then you go out into space and there are a whole load of unknowns, and you can't account for all of them.  Who knows what's out there in this sphere.  But the amount of preparation, it feels similar to me now, looking back.  We were so idealistic at the beginning.  Our grant to Dr Buj Bello was 2008 and actually it is a really fast time in, the first child was dosed in the gene therapy trial in September 2017.  Ana Lisa: So, we're talking less than 1 years.  Anne: Yeah. And in the meantime obviously as a charity we're also funding other proof of principle research. One of the founding principles of the charity was to have a really excellent peer review process and scientific advisory board so that we wouldn't get carried away with excitement about one lab, one research team, that everything would always come back to peer review and would be looked at coldly, objectively. I don't know how many times I've sat in a scientific advisory board meeting with my fingers crossed hoping that a certain application would get through because it looked wonderful to me, and then the peer review comes back and there are things you just don't know as a patient organisation. So, yes, in those 9 years we were also funding other work.  Ana Lisa: You've just given an interesting perspective on sharing the learnings between the scientists, clinicians, the experts in a particular condition, if you like, and the families, and I'd be really interested to hear your views on what's been learnt about how families and the patient community can also teach the clinical and scientific community.  Anne: So, the first child was dosed in September 2017 and by the World Muscle Society Conference 2 years later in October 2019 the biotech had some fantastic results to show. Children who had been 24-hour ventilated were now ventilator-free, which, unless you know what it's like to have somebody in front of you who's ventilator-dependent, the idea that they could become ventilator-free is just extraordinary.    However, one of the things we've learnt about gene therapy is that we are going out into space so there are extraordinary things to be found, and extraordinary results are possible, as is evidenced here, but there is so much that we don't know once we are dealing with gene therapy. So unfortunately, in May, June and August of 2020, 3 little boys died on the clinical trial. So we have a clinical trial where the most extraordinary results are possible, and the worst results are possible, and both of those things are down to the gene…  What we discovered and what is still being uncovered and discovered is that myotubular myopathy is not just a neuromuscular disorder, it is a disorder of the liver too, and these children didn't die of an immune response, which is what everybody assumes is going to happen in these trials, they died of liver complications.    And one of the things that has come out of that, well, 2 sides to that. Number one is that it is extraordinary that we have found a treatment that makes every single muscle cell in the body pick up the protein that was missing and produce that protein, but also what we've understood is that the knowledge and experience of families and patients is even more vital than we've all been going on about for a long time. Because the issue of there being a liver complication in myotubular myopathy has been hiding in plain sight all this time, because if you asked any family they would tell you, “Yes, my son has had the odd liver result, yes.”    We could see something that looked like it was not that relevant because it was outside the big picture of the disease, which was about breathing and walking and muscles, but actually there was this thing going on at the same time where the children had liver complications. There were some very serious liver complications but everybody thought that was a minor issue but if we are able to engage the people who live with the disease and the people who observe the disease at a much more fundamental level we may be able to see more about what these rare genes are doing.  Ana Lisa: Yeah, thank you very much for sharing such a moving story and with such powerful lessons for the whole community about how we listen to the expertise that families have about their condition, and also I think the really important point about how we tackle the research funding so that we're including and sharing learnings from the conditions that are initially studied in greater depth, and we hope that many more conditions will be better understood and more treatments found and that actually the learnings from these first gene therapy trials will really help inform future trials, not just for gene therapies but also for many other novel therapies that are being developed.  [Music plays] If you're enjoying what you've heard today, and you'd like to hear some more great tales from the genomics coalface, why don't you join us on The Road to Genome podcast. Where our host Helen Bethel, chats to the professionals, experts and patients involved in genomics today. In our new series, Helen talks to a fantastic array of guests, including the rapping consultant, clinical geneticist, Professor Julian Barwell, about Fragile X syndrome, cancer genomics and a holistic approach to his practice - a genuine mic-drop of an interview. The Road to Genome is available wherever you get your podcasts. [Music plays] Ana Lisa: Carlo, I would really like to come to you about some of the initiatives that are happening in the UK, and particularly it would be really interesting to hear about the UK Platform for Nucleic Acid Therapies as a sort of shining example of trying to do something at a national scale across potentially many different rare conditions.    Carlo: Thanks, Ana-Lisa. Thanks very much, Anne, for sharing your fantastic story. I mean, I just want to iterate that as clinician scientists we do constantly learn from experiences and constantly learn from you, from the patient community, and this is absolutely valuable to push the boundary. And I really liked your vision of a rocket being launched in space and I would imagine that this is a similar situation here. So, we are facing a major challenge. So, there is over 7,000 rare diseases in the world and with improvements of genetic diagnosis this is only increasing. So, in a way rare diseases is the ultimate frontier of personalised medicine and this poses incredible challenges.   So, you mentioned the bottom-up approach and the top-down approach and in a way, both are absolutely necessary. So your story is a fantastic story but also makes me think of all the other families where they don't share perhaps the same spirit, you know, they are in areas of the world that are not as well connected or informed, where patient community simply cannot be ‘nucleated', let's say, around the family. So, there is definitely an issue of inclusivity and fair access.    So, what we're trying to do at UPNAT, which is the UK Platform for Nucleic Acid Therapy, is to try to streamline the development both at preclinical and clinical level of nucleic acid therapies. So, we'll start with antisense oligonucleotides just because those are the molecules of the class of drugs that are most ‘mature', let's say, in clinic. So, there are several antisense oligonucleotides already approved in the clinic, we know that they are reasonably safe, we understand them quite well, but of course the aspiration is to then progress into other forms of gene therapy, including gene editing approaches, for example.   And one of the activities that I'm involved, together with Professor Muntoni, is to try to streamline the regulatory process of such therapies and in particular curate a registry of, for example, side effects associated with nucleic acid therapy in the real world, and you would be surprised that this is something that is not yet available.  And the point is exactly that, it's trying to understand and learn from previous mistakes perhaps or previous experiences more in general.    And this is very much in synergy with other activities in the UK in the rare disease domain.  I'm thinking of the Rare Disease Therapy Launchpad, I'm thinking of the Oxford Harrington Centre, I am thinking of the recently funded MRC CoRE in Therapeutic Genomics. These are all very synergistic. Our point is we want to try to amplify the voice of the patient, the voice of the clinicians working on rare disease, and we want to systematise. Because of course one of the risks of rare disease therapies is the fragmentation that we do all these things in isolation. And I would argue that the UK at the moment leveraging on the relatively flexible and independent regulatory agencies, such as the MHRA, on the enormous amount of genetics data available through Genomics England, and of course the centralised healthcare system, such as the NHS, is really probably the best place in the world to do research in the rare disease area, and probably I'm allowed to say it because I'm a non-UK native.       Ana Lisa: Thank you, that's a brilliant perspective, Carlo, and across all the different therapeutic initiatives that you're involved with. And, Carlo, presumably - we're all hoping - these different initiatives will actually lead to ultimately a bigger scaling as more and more novel therapies that target both our RNA and DNA and actually are working, I guess further upstream in the pathway.    So classically in the past it's been necessary to work out all the underlying biology, find a druggable target somewhere in that pathway and then get a larger enough clinical trial, which can be nearly impossible with many of the rare and ultra-rare conditions or even, as you've said, the sub-setting down of more common condition into rarer subtypes that perhaps can be treated in different ways.  And with the many new different treatments on the horizon, ASO therapies, as you've said, is a place that's rapidly expanding, and also crisper gene editing. I'd be really interested to hear your reflections on how this might scale and also how it might extend to other new treatments.  Carlo: Yeah, that's exactly the right word, ‘scaling up'. I mean, there will be of course very unique challenges to every single rare disease but I would argue that with genetic therapies, such as ASOs or crisper gene editing, the amount of functional work that you need to do in a lab to prove yourself and the scientific community that this is the right approach to go for can be certainly very important but can be less just because you're addressing very directly because of the disease.    And then there are commonalities to all these approaches and possibly, you know, a platform approach type of regulatory approval might serve in that regard. You know, if you are using the same chemistry of these antisense oligonucleotides and, you know, similar doses, in a way the amount of work that you need to produce to again make sure that the approach is indeed a safe approach and an effective approach might be also reduced.    I would say that there are also challenges on other aspects of course, as you were saying, Ana-Lisa. Certainly the typical or standard randomised placebo control trial that is the standard and ultimate trial that we use in a clinical setting to prove that a molecule is better than a placebo is many times in the context of rare diseases simply not possible, so we need to think of other ways to prove that a drug is safe and is effective.   This is something that we all collectively as a scientific community are trying to address, and the alliance with the regulatory agencies, such as the MHRA, and you said that you have found your interaction with the MHRA very positive, and I can tell you exactly the same. So we are all trying to go for the same goal, effectively, so trying to find a way to systematise, platformise these sort of approaches. And I guess starting with antisense oligonucleotides is really the right place to go because it's a class of drugs that we have known for a long time, and we know it can work.  Ana Lisa: Meriel, can you tell us a little about the National Genomic Research Library at Genomics England and how this could link with initiatives to find many more patients as new treatments become available for rare and ultra-rare conditions?  Meriel: Yes, I think what's wonderful now is actually that what we're really trying to do is give everybody the opportunity to have their rare condition specifically diagnosed at the molecular level, and the way in which that is being done is by offering whole genome sequencing in the NHS currently in England but to all patients with rare diseases.    And so, it's about trying to establish their diagnosis. And as well as that, even if the diagnosis isn't definitely made at the first pass when the clinical scientists look at the data, because the whole genome has been sequenced, actually all that information about their genome, if they consent, can then be put into the National Genomics Research Library.  And that is a fantastic resource for national and international researchers who get approved to work in this trusted research environment to make new disease gene discoveries and identify these diagnoses for patients.  What's also offered by Genomics England as well is when the National Genomics Library data results in a new publication, the discovery of a new gene or perhaps a new molecular mechanism that causes a disease we already know about, that feeds back into the diagnostic discovery pathway within Genomics England back onto the diagnostic side of all the data.    So, patients who may have had genetic testing previously using whole genome sequencing where they've, if you like, had their sequencing done before the diagnosis was sort of known about, will also be picked up. And so, what this is really doing is trying to kind of give this really equal platform for everybody having testing to all have the same opportunity to have their diagnosis made, either on the diagnostic side or with research.  Ana Lisa: So, sort of on a cohort-wide scale as new discoveries are made and published you can go back and find those patients that may actually have that diagnosis and get it back to them, which is brilliant.  Meriel: Exactly. And this speeds up the whole process of getting these diagnoses back to people. So on a regular basis in the NHS, we will get feedback from the Diagnostic Discovery Pathway about “Here's some patients who you requested whole genome sequencing from a number of years ago and actually now we think we know what the particular molecular condition is.”  And so, it's key of course for our patients with rare conditions to make that molecular diagnosis because then we're able to have them identified for our colleagues who are doing this ground-breaking research trying to bring therapies for these rare conditions.  Ana Lisa: Thank you. And I hope that, as currently, if a novel genetic mechanism, as you've just described, is identified that could explain a rare condition that those patients can be found and they can receive that diagnosis, even many years later, and hopefully as novel treatments become available and say there's a chance to individualise ASO therapies, for example, to start with, that one could also go and look for patients with particular variants that could be amenable potentially to that treatment. And that's really sort of exciting that one could look for those patients across England, irrespective of which clinic they're under, which specialist they're under, and I think that could be really powerful as new treatments develop. I suppose, Meriel, if somebody comes to see you now in clinic are things different?  Meriel: Well, I think one of the things for me when patients come to clinic now is we might have an idea about what we think their condition is, maybe even we think it's a specific gene. And we can offer whole genome sequencing and so it's not just the way we used to do things before by looking just at the coding regions of the gene, we can find more unusual ways in which the gene can be perturbed using whole genome sequencing.  But let's say we don't make the diagnosis. I encourage my patients, if they're comfortable with it, to join the National Genomics Research Library, because really it's been incredibly productive seeing the new genetic discoveries that are coming out of that, but as well I say to them, even if we don't get the diagnosis the first time round when we look at the data, actually this is a constant cycle of relooking at their data, either if they're in the NGRL or as well on the Diagnostic Discovery Pathway side of the service that's run by Genomics England. So yeah, I feel like it's a very big difference; they don't have to keep coming every year and saying, “Is there a new test?” because actually they've had an excellent test, it's just developing our skills to really analyse it well.  Ana Lisa: Yes, and our knowledge, the technology and the skills keep evolving, certainly.  And I think one of the things that I'm sort of hearing from this conversation is that balance of hope and realism, Carlo we were talking about earlier how you need all the pieces of the puzzle to be lined up - so the regulatory agency, the clinicians, all the preclinical work has to have been done, monitoring afterwards for side effects - every piece of the puzzle has to be lined up for a new treatment to make it to a patient.    And, Anne, I'd like to come back to you because we've talked about this before, how one balances these messages of optimism and hope which are needed for bringing everybody together as a community to crack some of these very difficult challenges highlighted by treatments for rare and ultra-rare conditions and at the same time the need for realism, a balance conversation.  Anne: Yeah, that was one of our big learnings through the gene therapy trial and other trials we've had in the condition. As a rare disease charity, you do everything. You know, my title is CEO, but I tell people that's Chief Everything Officer because there's only a few of you and you do everything. So, you go and you lead the London Hope Walk and you also are a layperson on the Scientific Advisory Board and you also send out the emails about grants... And so, you could easily as a small rare disease charity conflate different communication messages because you're in a certain mode.  And so we have been from the early days in the mode of raising hope for people to say, “Look, we can make a difference as a patient community, we could raise funds, we might be able to move things forward, you've got the power to make a difference if you want to.” That's one set of hope.  And it's not dreamlike hope, we're linked to the reality of there are great breakthroughs.  So, you know, in the world of spinal muscular atrophy these clinical trials have led somewhere very quickly, so we're not selling false hope, we're talking about the difference we can make.    But then as soon as you flip into “There's a clinical trial being run” that's a completely different type of communication and you cannot conflate that message with the previous message.  And we always say to everybody, “We're your team, we're a family, we're a team, we all help each other.  When you are considering joining a clinical trial your team is the clinical trial team.    The other team does other things for you but the people you need to work with and ask hard questions of and listen hard to, that's your clinical trial team led by the principal investigator because then you're in that with them. And, you know, the reality of the fact that many, many clinical trials don't work as we wish they would be and the decision you make for your child, your baby, your little one, to join a clinical trial… because that's what it comes down to in our disease, has to be made with that team, not the team that's selling you a fundraising event. It's worth reminding rare disease patient organisations we're wearing different hats and the hope and the realism are different tracks you have to go down.    But at the same time as being realistic you also have to keep remembering that there is still grounds for hope, we are moving forward. And 21 years ago, when Tom was born the idea that you would be able to get all of the muscles in the body to switch back on – putting it in lay terms – seemed like a bit dream. Well, that is what has happened in the gene therapy clinical trial, we just have to now make it safer and understand more about what we're dealing with. So, the 2 things, the hope and the realism, do exist side by side.  Ana Lisa: I think that perfectly encapsulates a lot of the messages around rare disease therapies where there's such hope that novel treatments will really target directly the DNA or RNA to potentially correct the problem across many different rare conditions and therefore actually making treatments one day suddenly available to a much, much bigger population of people with rare conditions than we could've dreamt of 20 years ago or perhaps now, and at the same time this massive need to work cooperatively to all make this as fair, as equitable. Not everybody is going to have the opportunity to fundraise massively to be an expert about their condition, and the importance of sharing these learnings and also really, really listening to the patient community and really, as Carlo was saying, keeping track of side effects, having registries/databases to share these is going to be incredibly important.  [Music plays]  Ana Lisa:  Anne, can you tell us a little about your reflections on equity from the patient community perspective?  Anne: Well I mentioned serendipity early and one of the aspects of serendipity that played into our favour for setting up the Myotubular Trust was that by hook or by crook Wendy Hughes, who set up the charity with me, and I were both able to devote time at that period of our lives to setting up a charity. When my husband, Andrew, and I were told that Tom would more than likely die before his first birthday, one of the decisions we made as a family was that he would never not be with a parent, we would always have someone around, and that kind of meant someone had to give up a full-time job and that was me.  We thought, “If Tom has a few scarce months on the planet, we'll be with him.” And then when Tom lived to be nearly 4, as a family we got used to living on one salary and we were very lucky that we could pay the mortgage that way and run our family that way and eventually that meant I had the time to run the charity.    That doesn't happen that easily, that's a tall order, particularly when you have somebody in the family who has such high needs. And one of the things that I have often thought about is that in the rare disease space we could do with a different funding model for rare disease charities, we could, in an ideal world I have this nirvana that I imagine where there's a fund that you can apply to that is contributed to by the people who make profits out of finding rare disease cures - so the pharmaceutical companies and the biotechs - and there's a fund that they contribute to and that if you have a rare disease and you are willing to set up an organisation that supports families, that raises research funds, that provides a way of hearing the patient voice, then you could apply to that for running cost funds and then you'd be able to run this charity. And then you wouldn't have to rely on whether you live in an area where people will raise money for you or…  We were very lucky that we came across a few great benefactors who would give us money for running the charity, which is actually how we fund it.    All the research money we raise goes 100% into research, not a penny of it goes towards running costs because we have serendipitously found people who will be benefactors for the charity, but we're relying on a lot of good luck for that kind of model to work. And when you look at how much profit is made from developing rare disease treatments and cures – which is fine because that's what puts the passion and that gets people working on it – then why not have an advance fund to run rare disease charities? One of my nirvana dreams.  Ana Lisa: It's good to dream. Indeed, my hope is that there will be some amazing shining examples that lead the way that open doors, make things possible, prove that something can work and how and that then that will enable many other treatments for many additional rare conditions to be added in so that if you've learnt how this particular treatment modality works for this rare condition and there was funding behind it and everything else that's needed that then you can, the learning from that, I'm going to use the word ‘tweak', which sounds minor and could be very major but actually the concept that you can then tweak all those learnings and findings so that that same type of treatment modality could be adapted to treat somebody else with a different rare condition in a different location would be absolutely incredible and really powerful, given that if something like 85% of rare conditions affect less than one in a million people it's not going to be feasible to use the same strategies that have been used in the past for very common conditions.    One of the other big barriers is the cost of developing treatment for ultra-rare conditions.  Where it's a small number of patients that you have and therefore all the challenges that come with monitoring, checking for efficacy, monitoring safety and ultimately funding the challenges are much greater, however if some of these treatment modalities are also going to be used to treat common conditions it might be that actually there's a lot more cross-talk between the nano-rare, ultra-rare, rare and common conditions and that we can share a lot of that learning. I'd love to hear from each of you where you hope we will be for rare disease and rare therapies.  Carlo: Well my dream is that in 5 to 10 years' time an individual with a rare disease is identified in the clinic, perhaps even before symptoms have manifested, and at that exact time the day of the diagnosis becomes also a day of hope in a way where immediately the researcher, the centre, genetics lab, flags that there are the specific mutations, we know exactly which is the best genetic therapy to go after, antisense oligonucleotides as opposed to CRISPR editing, and a path forward, both at the preclinical and clinical level, to demonstrate and to cure these patients eventually is already laid out in front of the patient.  So, transforming the day of their diagnosis as a day of hope, this is my dream with the next ten years.  Ana Lisa: Thank you, that's a wonderful dream. Meriel, can I come to you?  Meriel: Yes, I think I just want to echo Carlo.  We've had great developments and progress with getting whole genome sequencing into the NHS for testing but what we really need is for it to be fast and efficient and getting those diagnoses established quickly. And we have had that set up now and we're really getting there in terms of speed, but then what we need is exactly what's the next step and actually structure like UPNAT that are developing these processes that we can then say to the patient, “And from there, now that we've established your diagnosis, this is what we have options to offer.”  Ana Lisa: Brilliant. And presumably that if the diagnosis isn't achieved now there is a hope that it will be achieved in the future as well. Anne...  Anne: Well, stepping one hundred per cent into the patient's shoes rather than the scientific side that we don't so much influence....  stepping in the patient's shoes, in 5 years' time I would absolutely love it if we were in a situation where all the parties that have come to the table looking at a therapy or in the earlier research genuinely want to bring the patient voice into the room. As Carlo talked about, there's even going to be more and more and more of these rare diseases, then those voices, those few people who have experience of it, they may be able to shed light on something. Maybe even sometimes don't even know it's a fact that they know but that were brought to the table as passionately as everything else is brought to the table.  [Music plays]  Ana Lisa: We'll wrap up there. Thank you so much to our guests, Anne Lennox, Carlo Rinaldi and Meriel McEntagart, for joining me today as we discuss the collaborative power of working together and look to the future of rare therapies that could have the potential to unlock treatments for many rare conditions. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app.  Thank you for listening.  I've been your host, Ana-Lisa Tavares. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.  

Salve, camaradas!No Manhã Brasil desta quarta (26), ancorado pelo jornalista Mauro Lopes, os temas centrais são: 1) Mais uma pesquisa, agora do MDA, mostrando o governo Lula com uma crise brutal de popularidade. O MDA é o instituto que, desde Lula 1, mais acompanha sistematicamente a popularidade de presidentes. Lula está bem pior que Bolsonaro no mesmo tempo de governo (dois anos e, no caso, em meio à pandemia) e empatado com Temer, o presidente mais execrado do século; 2) Na pesquisa, Ciro Gomes aparece com força surpreendente; 3) Finalmente, a deputada Erika Hilton (PSOL-SP) protocolou a PEC pelo fim da escala 6x1. Mas ainda é preciso um despacho do presidente da Câmara para começar a tramitarOs convidados do Manhã são:Renato Freitas, deputado estadual pelo PT-PRDaniel Cara, professor da Faculdade de Educação da USP e líder na luta pela democratização e qualificação da EducaçãoLaura Sabino, youtuber marxista e integrante do MST

Coordination and communication are key ingredients to a healthy relationship with city leaders who are looking to their DDAs for economic development success. Paul Zelenak, long-time volunteer with the MDA and an experienced city manager who understands the value that DDAs bring, offers his perspective and experiences on building a better relationship with your CVT council in this episode of In MI Downtown.

In this episode, Kaylee Thornley (Grant Administrator, Agricultural Marketing & Development Division) and Mike Zastoupil (Food Systems Specialist) from the Minnesota Department of Agriculture (MDA), chat about the projects funded by one-time federal dollars as part of the American Rescue Plan Act. They also highlight additional grant opportunities available to businesses and entrepreneurs through the RFSI Program and MDA.

#361"The lensing effect of the window."Roundtable2024.08.22It's hot in the clubhouse and hot in Ellen's greenhouse this week, so your hosts are eager to crunch through some discussion. Ellen introduces the concept of the MDA framework, and the differences between Theming and Aesthetics, and Stephen comes to a major conclusion about parrying.Theming vs. Aesthetics0:06:40Ellen Burns-JohnsonGame DesignThe MDA Framework - WikipediaEllen promised Dictionary.com definitions, so here you go:Aesthetics - Dictionary.comTheme - Dictionary.comWe talked about theming and aesthetics for a GameJam Game from a previous episodeThe Bike BoomAlien Isolation Themes explored n : Demystifying the Terror of Alien Isolation - Andy Robertson, WiredParries0:28:56Stephen McGregorGame DesignStephen's list of why parries are so popular: 1) A way to reward mastery or paying attention 2) Rewards participation 3) An appreciable way to consider mastering the game The different variations of Parrying 1) Just Dodges 2) Traditional Parrying (miss = block) 3) Dynamic Parrying release parrying 4) Alternate button (paper mario parrying) EVO Moment 37 - Wikipedia

** Join the MDA: ⁠michigandental.org/2025⁠ In this episode of the Dental Download Podcast, Dr. Haley reflects on her personal and professional goals for the upcoming year. She discusses her achievements from 2024, including her reading goals and life events, and shares her vision board's impact on her aspirations. Dr. Haley outlines her goals for 2025, focusing on personal growth, financial planning, and maintaining a healthy work-life balance. She expresses gratitude for her podcast community and encourages listeners to share their experiences. Engage with the podcast on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dentaldownloadpodcast⁠⁠⁠⁠⁠⁠⁠⁠⁠ Haley's Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dr.haley.dds⁠⁠⁠⁠⁠⁠⁠⁠⁠ 

Amy Shinneman was born with Muscular Dystrophy but wasn't diagnosed until the age of 44. During this episode, we talk about: How her and her husband, Jamie, did the 50th year at Berlin and NYC … maybe Marine Corps Marathon in 2025? Tokyo in 2027? All about the Berlin Marathon and getting to Europe for the first time  Tackling the World Majors and how they're thinking about it  Living undiagnosed with a rare form of Muscular Dystrophy for 44 years  What it was like becoming a mom with an (unknown) disability  How she finally got a diagnosis of Bethlem Myopathy and how life was different after The MDA and the work she's done with them  What it's like being a mom with a disability     How her husband, Jamie, got into running because of their kids  Getting a duo bike from MDA and doing her first marathon with her husband pushing at the Chicago Marathon  How her son finished third in his age group at the New York City Marathon and received a Tiffany's plate    Race experiences and what she keeps in the duo bike during a race  How one of her sons taught her to run on an underwater treadmill  Using stem cell therapy as a way to treat MD The mental health side of having a disability  “Once you've met a person with a disability, you've met one person with a disability” The fact that people judge her (and have screamed at her) for parking in an accessible parking spot Thank you to Fringe Heals for supporting this episode. Use code ALLY25 for 25% off your order through 12/31/24. This is a SandyBoy Productions podcast.

In this week's season finale Kim and Kate are joined by Amy Poeher and they ask her some hard hitting gotcha questions and also order lunch. Then, they answer a question from an emailer who wants to be promoted but isn't sure it's going to happen. Then, Kim's mom finally makes her MDA debut and asks a question about when it's time to retire. Everyone's lives are changed forever and the workplace is improved for all involved. To learn more about listener data and our privacy practices visit: https://www.audacyinc.com/privacy-policy Learn more about your ad choices. Visit https://podcastchoices.com/adchoices

A clandestine chemistry interview unlike any other, this is the story of a man whose chemistry education was paid for by an organized crime ring. After learning the necessary skills, he was tasked with synthesizing increasingly large quantities of MDA under ever-rising pressure until the entire operation exploded.100s of unreleased episodes available at patreon.com/hamiltonmorrisMerchandise available at hamiltonmorris.comKykeon Analytics A fully anonymous mail-in drug checking lab service. CannaclearGet 15% off with the code HamiltonLucy Tobacco Free NicotineLucy's mission is to reduce tobacco-related harm to zero.Matcha.comAndrew Weil MD's matcha tea company. Use the code "Hamilton" for up to 20% off + a FREE gift.New BrewA delicious, euphoric seltzer.Top Tree Herbs Kratom Tea BagsTop Tree Herbs is the first kratom tea bag companyHamiltonMorris.comLimited Stock in Exclusive Hamilton Morris Podcast MerchandiseDisclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the show

** Join the MDA: michigandental.org/2025 In this conversation, Dr. Rachel Shaw shares her journey in dentistry, from her educational background at Midwestern University to her experiences as an associate and eventually becoming a practice owner. They discuss maternity leave as a dentist and balancing sharing the parenting load with your partner. She discusses the challenges of balancing family life with her career, the importance of mentorship in her early years, and her approach to patient care. Dr. Shaw also reflects on the impact of social media in changing perceptions of dentistry and offers advice for pre-dental students and new dentists navigating their careers. Dr. Rachel's tiktok: https://www.tiktok.com/discover/dr-rachel-dentist Engage with the podcast on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dentaldownloadpodcast⁠⁠⁠⁠⁠⁠⁠ Haley's Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dr.haley.dds⁠⁠⁠⁠⁠⁠⁠ 

Missile Defense Agency SBIR has $114M for SB InnovatorsThe US Missile Defense Agency has a $114M fund for small business innovation funding.Today Neil McDonnell chats with Candace Wright, Director of the SBIR / STTR Program Office for the Missile Defense Agency (MDA), and a champion for small business innovation.✅ In this Training, GovCon Chamber president Neil McDonnell discusses:What kind of ‘innovation' MDA is looking forHow to access MDA's non-dilutive funds for traditional government contractors and those not yet supporting federal agenciesWhy SBIR dollars should be part of your overall growth strategyDifference between successful and unsuccessful applicants✅ Join us on LinkedIn to build your network and engaging other in the largest Government Contracting community online. https://www.linkedin.com/newsletters/government-contracting-success-6895009566325907456/–––––––––––––––––––––––––

Join the MDA now**: www.michigandental.org/2025 In this engaging conversation, Dr. Haley and Dr. Chad discuss the evolution of Centerville Family Dentistry (CFD), the importance of community and patient relationships, and the mission that drives their practice. They explore the challenges and rewards of dentistry, emphasizing the need for effective communication with patients and overcoming barriers to health. The episode concludes with a reflection on the journey so far and a hint at future discussions. Be sure to subscribe to the podcast to see part 2 coming in the future where we dive deep into who Dr. Chad is as an individual and as a dentist! Our practice: https://www.smilecentreville.com/ Engage with the podcast on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dentaldownloadpodcast⁠⁠⁠⁠ Haley's Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dr.haley.dds⁠⁠⁠⁠ 

Missile Defense Agency SBIR has $114M for SB InnovatorsThe US Missile Defense Agency has a $114M fund for small business innovation funding.Today Neil McDonnell chats with Candace Wright, Director of the SBIR / STTR Program Office for the Missile Defense Agency (MDA), and a champion for small business innovation. ✅ In this Training, GovCon Chamber president Neil McDonnell and Candace Wright, Director of the SBIR/STTR Program Office for the Missile Defense Agency (MDA) discuss:What kind of ‘innovation' MDA is looking forHow to access MDA's non-dilutive funds for traditional government contractors and those not yet supporting federal agenciesWhy SBIR dollars should be part of your overall growth strategyDifference between successful and unsuccessful applicants✅ Join us on LinkedIn to build your network and engaging other in the largest Government Contracting community online.https://www.linkedin.com/newsletters/government-contracting-success-6895009566325907456/–––––––––––––––––––––––––

Episode Highlights: Mindy Henderson, a powerful advocate for disability rights and the Director & Editor-In-Chief of MDA's Quest Media. Mindy shares her journey of breaking barriers in the skies, working tirelessly to make air travel more accessible for wheelchair users and the broader disability community. She delves into practical tips for navigating travel with a wheelchair-using child, explains the importance of universal design, and discusses how sharing your story can be a catalyst for change. Mindy also talks about her book, The Truth About Things That Suck, and the role of mindset in overcoming adversity. Packed with inspiration and actionable advice, this episode is a must-listen for anyone looking to make the world more accessible, one step—or one flight—at a time. Links: Connect with Mindy Henderson on LinkedIn: LinkedIn Profile Learn more about MDA Quest: mdaquest.org Mindy's book - The Truth About Things That Suck: Amazon Link Tammy Duckworth - Every Day is a Gift: Amazon Link Get Involved and Take Action: Share your story on social media to raise awareness. Join disability advocacy groups to support accessible travel policies. Tune in and join us in supporting accessible, inclusive travel! Airplane Travel Tips from a One Million Mile Traveler The recent passage of the FAA Reauthorization Act

** ⁠Join the MDA now! - michigandental.org/2025⁠ In this episode of the Dental Download Podcast, Dr. Haley shares her experiences and insights from her journey through dental school and into her early career as a dentist. She discusses the importance of community, personal growth, and the lessons learned along the way. Dr. Haley emphasizes the significance of asking for opportunities, maintaining a work-life balance, and the value of being prepared for when opportunities arise. She also provides advice for students and young professionals in the dental field, encouraging them to embrace their unique selves and seek support from their communities. Engage with the podcast on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dentaldownloadpodcast⁠⁠⁠⁠ Haley's Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/dr.haley.dds⁠⁠⁠⁠  Make your podcast on Riverside: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.riverside.fm/?utm_campaign=campaign_5&utm_medium=affiliate&utm_source=rewardful&via=haley Keywords: Dental Download Podcast, Dr. Haley, dental school advice, personal growth, community support, work-life balance, financial planning, fitness recommendations, MSU, dental career

Learn more about MDA memberships: www.michigandental.org/2025 In this conversation, Dr. Lisenia Colazzo shares her journey from Pennsylvania to Puerto Rico and then to Michigan, where she serves as a public health dental director. She discusses the importance of organized dentistry, the challenges of access to care in rural areas, and her advocacy work within the Michigan Dental Association. Dr. Colazzo emphasizes the need for community engagement and the empowerment of patients through education and improved access to dental care. She also shares personal insights on balancing her professional and personal life, including her love for travel and reading. Keywordspublic health, dentistry, organized dentistry, access to care, community health, leadership, advocacy, dental education, underserved communities, Michigan, Michigan Dental Association

If you're thinking about going vegan as a family, or you're already vegan and expecting a wee one and wanting to raise them vegan, this is the episode for you! As a plant-based dietitian and mom of 2, this is an episode I've been meaning to do for a while! There is a lot of misinformation about feeding kids a vegan diet…and a weird amount of negative headlines that have been attributed to vegan eating that were really parents not feeding their kids properly. So I'm super excited to be chatting with registered dietitian Karla Moreno-Bryce RD, who focuses specifically on vegan pediatric nutrition, all about how to feed vegan kids well. The reality of fostering healthy growth and development isn't all that different, whether your children are omnivores, vegetarian or vegan. Kids have specific nutrient needs, like protein or calcium, and you simply need to ensure that you are offering foods rich in those nutrients! So in this episode, we get into specifics about nutrients of concern and which foods and supplements are essential for meeting their needs. It will help you get clearer on how to plan your family meals so that your kids thrive on a plant-based diet.About Karla: Karla Moreno-Bryce, MDA, RD, LD is a leading expert in pediatric vegan nutrition, author of the Vegan Kids Cookbook, and mom of two vegan girls. She has worked with hundreds of committed vegan parents from all around the world to help them feel confident feeding their kids a vegan diet for proper growth and development. Her insights have been featured in highly recognized outlets like Huffpost, BBC, and National Geographic and has been a speaker at the Vegan Women Summit, Twin Cities Veg Fest, and NYU Langone Health. In her spare time, she enjoys having picnics with her family—unless it's in the middle of Winter in Minnesota.  On this episode we chat about: Is it possible to raise healthy vegan kids? Going vegan as a family Which nutrients do we need to watch most for vegan kids? Talking about iron-fortified cereals: yay or nay? The one important mineral that no one talks about for vegans  How much protein do kids need? The best plant-based milk for kids How to navigate high fibre foods with little tummies Making sure kids get enough energy for growth What supplements do vegan kids need? Navigating the family meal Support the Pod! We couldn't make this podcast happen without the support of our amazing listeners… I love hearing your feedback on these episodes to be sure to join the conversation on our instagram @theallsortspod @desireenielsenrd @vegan.kids.nutrition If you love this episode, please share it with your friends and family, or take a minute to rate, review or subscribe on your favourite podcast app. We appreciate EVERY. SINGLE. LISTEN! recommendations

In this powerful episode, Tah shares insights from the Sex & Psychedelics panel hosted by the Psychedelic Society of Texas on September 19, 2024. Joined by a dynamic group of experts, including Danielle Arbery Smith, Ashley Carmen, and Drea Aguilar, the discussion dives deep into the intersection of sex and psychedelics. Together, they explore how altered states can enhance intimacy, facilitate profound healing, and reprogram deep-seated traumas. Topics include setting boundaries before engaging in psychedelic or sexual experiences, creating safety, and how psychedelics can unlock new levels of personal and relational awareness. Whether you're curious about psychedelics or exploring how to integrate them into intimate relationships, this episode provides valuable tools and insights. Tune in for a raw, unfiltered conversation on the power of psychedelics to transform the way we connect with ourselves and others. Key Takeaways: How psychedelics can rewire trauma and enhance intimacy The importance of boundaries and intentional preparation Personal stories of healing and growth through sex and psychedelics Practical advice for couples and individuals exploring altered states Disclaimer: This podcast is for informational and educational purposes only. It is not intended as medical advice. Please consult with a healthcare professional before engaging in any practices involving psychedelics or sexual health. Featured Guests of this Episode: Danielle Aubrey Smith @DanielleAubreySmith Ashley Carmen @theashleycarmenjourney @psychedelicguidenetwork  www.psychedelicguidenetwork.com    Drea Aguilar @conscious.mother Psychedelic Society of Texas www.psytexas.com @psytexas AstUs Co @Artuscoart   You've been introduced to the world of psychedelics and plant medicine - but you're left wondering, “Okay, now what?” Become a Psychedelic-Informed Practitioner Because integration is NOT optional. Boundary Blueprint Course Visit Our Home on the Web, get more information and join The Condor Approach Take our Free Audio Course on Psychedelic Integration Download Our 7-Day Integration Guide FREE Follow Us on Instagram for All things Condor Approach Follow Kole on Instagram Follow Tah on Instagram

The audio of this podcast was originally posted on 11/2/23. This is the video version. We are posting this again because one of the most common questions we get have to due with drug testing. We often hear from pain patients who were dismissed from their doctor for failing their drug test. They say there is no way the test is right. Ed Brown gives some possible explanations. Edward Brown's Bio: Edward G. Brown is a chemistry expert with over twenty-five years of laboratory research experience, over 5 years of patent work experience and over twenty years of experience assisting attorneys in chemistry cases as chemistry expert and expert witness.  His technical and academic background includes the following: B.S. degree in chemistry from the University of California, Berkeley; Ph.D. in chemistry from the University of California, Davis; In addition, Dr. Brown received post-doctoral research fellowships from the University of Auckland, NZ and Yale University; he pursued chemical analysis and chemistry research related to methodology development in organic chemistry at those institutions. Dr. Brown has also worked in a number of biochemical and pharmaceutical companies during his career as a research chemist, staff scientist and senior research scientist; he currently provides clients with in-lab contract medicinal chemistry research expertise as well as patent drafting and expert witness services. He is a coauthor on over twenty chemistry articles and is a co-inventor on ten U.S. patents.  He has testified in both state and federal courts as a chemistry expert in both criminal and patent litigation cases. His expertise as a medicinal chemistry expert in criminal drug cases has expanded over the years and includes advising in cases involving: methamphetamine and amphetamine analysis, manufacture, possession and sale; fentanyl, opioid and opiate analysis, possession and sale; cocaine analysis, possession and sale; LSD analysis, possession and sale; MDMA and MDA analysis, manufacture, possession and sale; benzodiazepine analysis, possession and sale; analysis, possession and sale of synthetic cannabinoids; and in hemp, THC and marijuana cases. Dr. Brown currently advises attorneys and other clients in criminal, patent and litigation cases as a medicinal chemistry expert and consultant in Durham, NC. His webpage can be found at: ⁠www.ExpertChemistryServices.com⁠ The Doctor Patient Forum is a national non profit organization fighting for the rights of pain patients and their providers. We bring awareness to the untreated pain and patient abandonment crisis. We are also knows as Don't Punish Pain Rally. ⁠https://www.patreon.com/thedoctorpatientforum⁠ ⁠https://www.thedoctorpatientforum.com/⁠ #thedoctorpatientforum  #dontpunishpainrally #chronicpain #opioids #chronicpainpatient #patientabandonment #harmreduction #chronicillness #medicalgaslighting #dpfpatreon #pain #opioideliminationindustry #opioidelimination #patreon #thedoctorpatientforumpatreon #harmreduction #medicalgaslighting #UDT #drugtest #toxscreen The information contained in this podcast is not to be considered medical or legal advice

7:20 a.m. - William "Bill" Cork - Executive Director, MS Development Authority Topic: An update from MDA, and he is prepared to discuss projects they've closed on since last time he was on air, the size of the project pipeline, interest in Data Centers since AWS made their announcement. Along with his trips abroad. He's been in London, Germany, Panama, and has upcoming trips to Japan and Taiwan. Bill will update some of the big deals: AWS, Amplify Cell, Aluminum Dynamics, etc. He will also discuss the economy and the current state of economic development in MS. 8:05 a.m. - Paige Roberts - President & CEO, Jackson County Chamber of Commerce & Opinion Column Contributor, SuperTalk MS News Topic: September is suicide prevention and awareness month, the work that she is doing in her community to help with awareness and understanding mental health.

Our guest this week is Nate Plasman of Lombard, IL, a vice president at family owned Monroe Transportation and father of three, including a son with a rare genetic disease.Nate and his wife, Sara, have been married for 20 years and are the proud parents of three children: Grace (15), Jackson (12) and Andrew (10) who has Duchenne Muscular Dystrophy, a progressive and severe muscle-wasting condition that typically results in premature death.Duchenne impacts around 15,000 individuals in the United States, predominantly males, and over 300,000 globally. It is a condition that transcends cultural, economic, and social lines, affecting families worldwide.We learn about a host of organizations seeking cures and improving the lives of those living with muscular dystrophy, including; Parent Project MD, Cure Duchenne and Serepta Therapeutics. It'a an uplifting story about faith, family and overcoming adversity all on this episode of the SFN Dad to Dad Podcast. Show NotesPhone – (630) 248-3220Email - nate@monroe-trans.comLinkedIn - https://www.linkedin.com/in/nathan-plasman-0a050149/Facebook - https://www.facebook.com/nathan.plasman/friendsMonroe Transportation – https://monroe-trans.com/Parent Project MD - https://www.parentprojectmd.org/Cure Duchenne - https://cureduchenne.org/Serepta Therapeutics - https://www.sarepta.com/Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/  

From the ………………. Studio, Welcome to the Marietta Daily Journal Podcast.    Today is Thursday, September 5th and Happy Birthday to ……………. Freddie Mercury    I'm Dan Radcliffe and here are the stories Cobb is talking about, presented by Credit Union of Georgia.  Former Mountain View Coach Killed in Apalachee Shooting Remembered Fondly A 'Reimagined' Mableton: Development Authority Revamped Mother and Son Open Cumberland Restaurant   Plus, Bruce Jenkins sits down with Leah McGrath from Ingles Markets to discuss kombucha   All of this and more is coming up on the Marietta Daily Journal Podcast, and if you are looking for community news, we encourage you to listen and subscribe!    BREAK: CU of GA    STORY 1: Former Mountain View Coach Killed in Apalachee Shooting Remembered Fondly Marquel Broughton, a Mountain View High School graduate and U.S. Military Academy alumnus, considers his former coach, Ricky Aspinwall, a true hero. Aspinwall, who had recently moved to Apalachee High, was tragically killed in a school shooting on Wednesday. Known for his dedication and impact on students and athletes, Aspinwall was remembered as a loving mentor and role model. He was a highly respected defensive coach and teacher, recognized for his contributions to Mountain View's football program and his genuine care for his students. His legacy is honored by those he inspired and mentored throughout his career. STORY 2:  A 'Reimagined' Mableton: Development Authority Revamped Mableton Mayor Michael Owens, driven by his concerns about local blight and economic opportunities, has established the Mableton Development Authority (MDA) to boost economic growth. This new independent board replaces the underfunded South Cobb Redevelopment Authority. The MDA, funded by $100,000 annually from Mableton, will work closely with the Cobb Chamber of Commerce and its economic development arm to market the city and drive development projects. Key initiatives include revitalizing Veterans Memorial Highway and the Six Flags Entertainment District, and developing the Magnolia Crossing site. Owens envisions the MDA as crucial for transforming Mableton into a more vibrant, economically robust community.   STORY 3:  Mother and Son Open Cumberland Restaurant Robyn Thompson, CEO of Ashland's Kitchen, has opened a new restaurant in Cumberland with her son Jacob Higbee. Located on the ground floor of One Overton Park, Ashland's Kitchen offers a menu of seasonal, mostly scratch-made dishes for breakfast and lunch, including unique options like shakshuka, keto pancakes, and vegan “chicken” nuggets. Inspired by their global travels and Thompson's early love for cooking, the restaurant features comfort foods and creative salads, alongside a convenience store for quick snacks. Open Monday through Friday, Ashland's Kitchen aims to bring joy with its innovative food offerings and plans to expand catering and delivery options soon.   We have opportunities for sponsors to get great engagement on these shows. Call 770.799.6810 for more info.    We'll be right back  Break: DRAKE STORY 4:  Scamihorn Outraising Benson in Cobb School Board Race In the race for Cobb Board of Education's Post 1 seat, incumbent Republican Randy Scamihorn significantly outpaces Democratic challenger Vickie Benson in fundraising. Scamihorn has raised over $25,000, including significant contributions from the law firm Freeman Mathis & Gary and local nonprofits. In contrast, Benson has reported just $245.51 in recent filings, though she previously raised $1,065. Despite this disparity, Benson views her campaign as a fight for accountability rather than a fundraising competition. Both candidates will face off in the November election, with control of the school board potentially hanging in the balance. STORY 5:  Marietta Schools to Host Town Hall Following Winder School Shooting Marietta City Schools will hold a virtual town hall on Thursday evening to address safety concerns following a deadly school shooting at Apalachee High School in Winder. The shooting, which resulted in at least four deaths and multiple injuries, has prompted Marietta Schools Superintendent Grant Rivera to offer a platform for addressing school safety questions. The webinar will be livestreamed from 8:30 to 9 p.m., and questions can be submitted beforehand via email. Cobb Schools Superintendent Chris Ragsdale also expressed gratitude for the efforts of school district police and first responders. The event will be available on the Marietta School District's website for later viewing.   We'll be back in a moment    Break: INGLES 4   STORY 6: LEAH MCGRATH And now here is the conversation with Leah McGrath from Ingles Markets to discuss kombucha   STORY 7: LEAH INTERVIEW     Break:   Signoff-   Thanks again for hanging out with us on today's Marietta Daily Journal Podcast. If you enjoy these shows, we encourage you to check out our other offerings, like the Cherokee Tribune Ledger Podcast, the Marietta Daily Journal, or the Community Podcast for Rockdale Newton and Morgan Counties. Read more about all our stories and get other great content at https://www.mdjonline.com/ Did you know over 50% of Americans listen to podcasts weekly? Giving you important news about our community and telling great stories are what we do. Make sure you join us for our next episode and be sure to share this podcast on social media with your friends and family. Add us to your Alexa Flash Briefing or your Google Home Briefing and be sure to like, follow, and subscribe wherever you get your podcasts. www.henssler.com  www.ingles-markets.com  www.cuofga.org  www.drakerealty.com  www.elonsalon.com  #NewsPodcast #CurrentEvents #TopHeadlines #BreakingNews #PodcastDiscussion #PodcastNews #InDepthAnalysis #NewsAnalysis #PodcastTrending #WorldNews #LocalNews #GlobalNews #PodcastInsights #NewsBrief #PodcastUpdate #NewsRoundup #WeeklyNews #DailyNews #PodcastInterviews #HotTopics #PodcastOpinions #InvestigativeJournalism #BehindTheHeadlines #PodcastMedia #NewsStories #PodcastReports #JournalismMatters #PodcastPerspectives #NewsCommentary #PodcastListeners #NewsPodcastCommunity #NewsSource #PodcastCuration #WorldAffairs #PodcastUpdates #AudioNews #PodcastJournalism #EmergingStories #NewsFlash #PodcastConversations   See omnystudio.com/listener for privacy information.

WGN Radio's Dave Plier and Dave Schwan talk about the history of the American labor movement and the legacy of comedian Jerry Lewis and what was an annual tradition on Labor Day weekend, the MDA telethon.

This woman had a serious issue after taking MDA...

Aryeh purposely drove towards the massive terror attack during the ground invasion and while hundreds of rockets rained down on October 7th. Magen David Adom (MDA), Israel's ambulance service, was part of Hamas' initial focus on that day. Hamas specifically targeted ambulances and first responders, killing many of them and destroying their ability to care for the victims and even injured terrorists.- mdais.org/en- mdauk.org (MDA UK)- afmda.org (American Friends of MDA)YouTube Version: www.youtube.com/RadicalLifestyle- Radical Lifestyle Instagram Click Here- X: Click Here- TikTok: Click Here- Telegram channel and discussion: Click HereYou can also follow Andrew and Daphne on their social media platforms:Andrew Kirk: Facebook | InstagramDaphne Kirk: Facebook | InstagramTo support the channel: Click Here- UK only Donations here: Click Here

Our guest this week is Mazi Keyghobadi of Houston, TX, a father and outspoken advocate for those with disabilities. Mazi, who was born and raised in Iran, emigrated to the U.S. as a teenager with his parents and brothers in 2000. Mazi and his x-wife, Dunia, were married for nine years, before divorcing in 2021 and are the proud parents of son, Luka (7) who has Duchenne Muscular Dystrophy.Mazi has also formed Hope For Luka, a non-profit dedicated to funding Muscular Dystrophy research with the objective of finding a cure as well as advanced therapies for those impacted by Muscular Dystrophy. It's a an uplifting story about overcoming adversity, a father's commitment to his son, and advocacy for others.  All on this episode of the SFN Dad to Dad Podcast. Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/ 

It's hot in the clubhouse and hot in Ellen's greenhouse this week, so your hosts are eager to crunch through some discussion. Ellen introduces the concept of the MDA framework, and the differences between Theming and Aesthetics, and Stephen comes to a major conclusion about parrying.0:06:40Theming vs. AestheticsThe MDA FrameworkWikipediaEllen promised Dictionary.com definitions, so here you go:AestheticsDictionary.comThemeDictionary.comWe talked about theming and aesthetics for a GameJam Game from a previous episodeThe Bike BoomAlien Isolation Themes explored n : Demystifying the Terror of Alien IsolationAndy RobertsonWired0:28:56ParriesStephen's list of why parries are so popular: 1) A way to reward mastery or paying attention 2) Rewards participation 3) An appreciable way to consider mastering the game The different variations of Parrying 1) Just Dodges 2) Traditional Parrying (miss = block) 3) Dynamic Parrying release parrying 4) Alternate button (paper mario parrying) EVO Moment 37Wikipedia

In this episode, we start by talking about Berkshire Hathaway's record cash holdings which have now reached 277B.  Simon then goes over the mechanics of RRIFs and LIFs, offering a detailed breakdown of how these retirement income funds work. He also shares learnings following the conversion of his parent's investments to RIFs and LIFs. We also revisit a Canadian small-cap company, MDA, which Braden had previously flagged as one to watch and why it's still on his radar.  Finally, we'll discuss Bitcoin's recent volatility, examining how the unwinding of the Yen Carry Trade has impacted the market..   Tickers of Stocks & ETF discussed: GM, F, SPOT, DIS, BMW, VOW, PARA, WBD, RY.TO, TD.TO Check out our portfolio by going to Jointci.com Our Website Canadian Investor Podcast Network Twitter: @cdn_investing Simon's twitter: @Fiat_Iceberg Braden's twitter: @BradoCapital Dan's Twitter: @stocktrades_ca Want to learn more about Real Estate Investing? Check out the Canadian Real Estate Investor Podcast! Apple Podcast - The Canadian Real Estate Investor  Spotify - The Canadian Real Estate Investor  Web player - The Canadian Real Estate Investor Sign up for Finchat.io for free to get easy access to global stock coverage and powerful AI investing tools. Register for EQ Bank, the seamless digital banking experience with better rates and no nonsense.See omnystudio.com/listener for privacy information.

Paraneoplastic neurologic syndromes can present with manifestations at any level of the neuraxis. In patients with high clinical suspicion of a paraneoplastic neurologic syndrome, cancer screening and treatment should be undertaken, regardless of the presence of a neural antibody. In this episode, Katie Grouse, MD, FAAN, speaks with Anastasia Zekeridou, MD, PhD, author of the article “Paraneoplastic Neurologic Disorders,” in the Continuum August 2024 Autoimmune Neurology issue. Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California San Francisco in San Francisco, California. Dr. Zekeridou a senior associate consultant in the departments of neurology, laboratory medicine, and pathology, and for the Center for Multiple Sclerosis and Autoimmune Neurology at Mayo Clinic in Rochester, Minnesota. Additional Resources Read the article: Paraneoplastic Neurologic Disorders Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Guest: @ANASTASIA_ZEK Transcript Full transcript available here   Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME.   Dr Grouse: This is Dr Katie Grouse. Today, I'm interviewing Dr Anastasia Zekeridou about her article on classical paraneoplastic neurologic disorders, which is part of the August 2024 Continuum issue on autoimmune neurology. Welcome to the podcast, and please introduce yourself to our audience.   Dr Zekeridou: Hi. Thank you, Dr Grouse. I'm always excited to talk about paraneoplastic neurological diseases. So, I'm an autoimmune neurologist at Mayo Clinic in Rochester, and I spend my time between the lab and seeing patients in the autoimmune neurology clinic.   Dr Grouse: Thank you so much for joining us, and we're really excited to talk about this really important topic. So, to start, I'd like to ask what, in your opinion, is the key message from this article.   Dr Zekeridou: That's a good question - there are a lot of messages, but maybe if I can distill it down. For me, one of the first things is that paraneoplastic neurological diseases can actually affect any level of the neuraxis. It can manifest with different types of presentations. If we do suspect a paraneoplastic neurological syndrome, then we need to look for the cancer, and then if we're not certain, even do an immunotherapy trial. A negative antibody does not make for an absence of a paraneoplastic neurological disease (because, often, we depend a lot on them), but you can see patients with paraneoplastic disease that do not have neural antibodies. And then, we always need to be thinking that if we have a paraneoplastic neurological disease, we actually need to be thinking of both the cancer and the immune response together - so, we need to be treating the cancer, we need to be treating the immune response – because, essentially, paraneoplastic neurological syndrome is evidence of this antitumor immune response. So, the main (if I can distill this down in one) is probably that we need to be discussing all of these patients with the treating oncologist, because they have complicated care.   Dr Grouse: Great. Thank you so much for that summary. It's very helpful. While many of our listeners are likely familiar with paraneoplastic disorders in their workup (which you've mentioned just now), the concept of neurologic autoimmunity in the context of immune checkpoint inhibitor therapy has more recently become widely recognized. Can you summarize this briefly for our listeners who may be less familiar with this?   Dr Zekeridou: I think that we learn more and more about this and we see more and more patients with immune checkpoint inhibitor-related neurological immunity, so, I always think about it in a very straightforward way. So, I think the way we think about immune responses is a balance between tolerance and regulation and immune activations. And then, immune checkpoints are the molecules that help us maintain self-tolerance. So, our immune system - it's probably the best tool that we have to fight against cancer. So, essentially, when we inhibit the immune checkpoints, we actually use our own immune system to fight cancer, but taking the breaks of the immune system essentially can lead to a lot of complications that are immune-mediated. Some of them are neurological - the neurological complications are rare, especially the ones that we need to do something about (so, it's 1% to 4%, in some cases up to 14%), and they do increase when you use multiple immune checkpoint inhibitors together. The main thing for me with the neurological complications is that, sometimes, they are difficult to recognize, they can (again) affect every level of the neuraxis - like, it can be the neuromuscular or the central nervous system (even though neuromuscular complications are much more common than central nervous system complications) - and then a lot of them (the vast majority) will happen within the first three months, but they can also happen even after you stop the immune checkpoint inhibitor. But this three-month interval, it's sometimes useful when you're in a diagnostic silence - it kind of helps you make the decision more towards an immune-related adverse event affecting the nervous system. And then, I think that, practically, once we have diagnosed this patients, we still are not very certain how to treat. All of them will get steroids upfront, but some of them will be difficult to treat, so then, we have to decide on the next treatment depending on evolution. And then, I will just say that (I mentioned it previously, but) these are the patients that the coordination with other subspecialties is one of the main things that we need to do (eg, oncologists) - they often have immune-related adverse events from other systems, so, there is a lot of coordination of care. And, always, the question at the end comes up, Should we be putting these patients back to their immune checkpoint inhibitor cancer immunotherapy that might help them with the cancer? And I think that this is difficult sometimes, and it needs to be decided - most cases - in a case-by-case basis, even though there are some recommendations that I've been discussing in the Continuum article.   Dr Grose: That's great, and I encourage everyone to read more about this, because it is a very complex and fascinating topic. On the note of the immune checkpoint inhibitor neurologic dysfunction - I would imagine these are pretty rare - how common are these? And I would suspect they're getting missed a lot - is that correct?   Dr Zekeridou: I think it's a very good question. Essentially, what we say for the neurological immune-related adverse events (the ones that we need intervention) - so, they are at least of grade two. (I think that there are less than 4%, mostly, probably close to 1.5%.) There was a study where they used double immune checkpoint inhibitors (so CTLA-4 and PD-1, PD-L1) - they were up to 14%, but this was any grade (so, a little bit of tingling, a little bit of headache), while the ones that we actually need to act upon and we need to actually do something about, they are probably closer to 1.5%. So, are they being missed? I am certain that some of them never make it to the neurologist. So, the ones that we know that we are underestimating is definitely the meningitis - because I think it's more common – but, often, when the patients present, they have something else as well. So, the oncologists will put them on steroids and then they will get better - so, we don't really see them in the neurology clinic (the ones with the very mild side effects). And then, also, these patients are often very sick, and they have a lot of things going for them, so they sometimes do not make it to the diagnosis.   Dr Grouse: So then, I want to just take a step back and ask you, what's the most challenging aspect of paraneoplastic neurologic disorders in your opinion?   Dr Zekeridou: I think, for me, one of the main things, the classic paraneoplastic disorders - and when I say “classic paraneoplastic disorders”, they are the ones that we think more of with antibodies that are mostly biomarkers of the immune response, and they suggest a cytotoxic T-cell mediated disorder (so, like PCA1 [or anti-Yo] or ANNA-1 [or anti-Hu]) - these patients are very sick often, and we don't have a lot of good treatments for them. And then, even if we treat them, we actually sometimes do not manage to reverse their course - the best that we can do is stabilize. So, I think that this is part of the discussion that we have upfront with these patients - but it is quite challenging, because most of them, we will be giving them a cancer diagnosis ourselves, because we recognize the paraneoplastic neurological syndrome, and we look for the cancer, and then we'll be giving them a cancer diagnosis. And even if we treat their cancer and we treat the immune system, sometimes, then, we don't make a real improvement – like, we stabilize their disease and we sometimes get improvement, but there are cases that we do not and they continue to progress – so, that has been the most challenging aspect of this, and I think that's kind of where we really need more things coming – like, we need more treatments, we need to better understand these diseases and get more straightforward.   Dr Grouse: I agree. I think that's absolutely, uh, what we all hope for these types of disorders, and I can imagine we all can remember at least one case just like this where someone had this type of problem and just didn't respond to treatment. So, strong hopes that there will be improvement with this in the years coming. Another question I have for you is, what in your article do you think would come as the biggest surprise to our listeners?   Dr Zekeridou: I think that, because we discussed that immune checkpoint inhibitors (maybe we don't know as well), so one of the main things for me is when we first started thinking of neurological complications of immune checkpoint inhibitors, there was a lot of myasthenia gravis mentioned (patients presenting with myasthenia gravis), and then some of them antibody-positive, some of them antibody-negative. Now, with the time that has passed by, we recognize that myasthenia gravis is very rare. Like, I've seen tons of patients (probably more than that, actually) – and then, maybe I've seen one patient with de novo myasthenia gravis. We realize that the immune checkpoint inhibitor myasthenia gravis that we were thinking of are – they're mostly the immune checkpoint inhibitor myocytes cases - so, then, this is one of these myopathies that looks like no other. So, it really has a very predominant oculobulbar involvement (that's why everybody was thinking that this is myasthenia gravis), but, practically, the EMGs are negative, the patients do not respond to pyridostigmine - so, practically, these are really myopathy cases. And why is that important? Because 30% to 40% of these cases might also have a cardiomyopathy, for example, and then we're putting all these patients on pyridostigmine and medications that they do not necessarily need. So, I think one of the chains in concepts that we have in the later years is that, really (and this is one of the most common immune-related adverse events that we see in our clinic), that these patients with ICI myositis really present with the oculobulbar involvement and proximal involvement that we can see in myasthenia, but they do not have a neuromuscular junction problem.   Dr Grouse: Now, we've all struggled with identifying a primary malignancy in patients where a paraneoplastic syndrome was strongly suspected. Do you have any tips on how to make this workup as high yield as possible?   Dr Zekeridou: Yeah, I think that's a difficult question. I think it depends a little bit on your patient as well. So, if you have an antibody that makes things easier (and we can discuss about that, but), practically, for me, a patient that I have a high suspicion, that we get a CT chest, abdomen, and pelvis upfront - and often, we don't get PET scans, right, directly, because we have insurance companies maybe playing a role in what we would do. So, I would get this for a woman - she has to have a mammogram. For a man, they have to have a testicular ultrasound. That's the basics for me. And then, when we see more younger women or when we suspect an MDA, then they will need to have the ultrasound to look for the ovarian teratomas or an MRI of the abdomen - so, the PET scan for me, if I have a high suspicion, it will always be the next step. Like, we have increased diagnostic yield with PET scans, but we also need to remember, what are the tumors that you will not find on a PET scan? Teratomas are not PET-avid, and, often we say, “Oh, we found the lesion in the ovary and the PET scan was negative.” That doesn't matter. In an NMDA-receptor antibody patient, if you find the lesion in the ovary, you need to make certain it's not a teratoma, because PET scans will not necessarily pick up a teratoma - it's not an avid malignancy. So, if the patient is a smoker and I suspect small-cell lung cancer, so I would always get the PET scan. If I have a patient with a high-risk antibody like PCA1 (or anti-Yo) and I didn't really find the tumor with the CT chest, abdomen, and pelvis and the mammogram, I will always get the PET scan. Same for the patients with the smoking history. I will also say that, sometimes, we forget other malignancies. So, for example, we have neuronal intermediate filament antibodies (so, ANNA-3 antibodies), and some of them will have Merkel cell. So, depending on the patient, on the antibody, and if we didn't find anything else, I would do a skin check. If they have GI symptoms, I would look for the GI tumor as well. So, even though the basics are what I mentioned, I will adapt depending on the patient symptoms. And all of these patients should have age-appropriate cancer screening, so if they didn't have a colonoscopy, they will have to have a colonoscopy. So, this is part of the main things. And then, the question for me that always comes up is, “Who is the person that you're going to keep on repeating the screen?” And then, practically, if you have a low-risk paraneoplastic antibody that comes (let's say LGI1), we know it's a low risk, so I would actually do the cancer screening - I will look for the thymoma once, and then that would be it. But if you have a patient with a high-risk paraneoplastic antibody (let's say ANNA-1 [or anti-Hu] or anti-Yo [anti-PCA1]), these are the patients that I will keep on screening - and then I will do every four to six months for two years (that's the current recommendation), but I will probably continue yearly after. And then, we need to also remember that whenever you have a neurological relapse, that's exactly when you need to be looking for the cancer as well - so, you must be thinking that the idea is that maybe you have the immunological relapse because there is cancer somewhere. So, these are the types of things that I kind of adapt to specific patients. But I think when we're not certain, broad screening is what we need. And then, again, the PET scan - for me, it's a great test, but we need to know its limitations. So, that's the other thing that comes up a lot in the phone calls or in the patients that I see that we do a PET scan - but practically, it's not good for some of the malignancies that we're looking for.   Dr Grouse: That's really great to point out, and I'm glad you brought up the risk level of the particular syndrome. You have a great table in your article that summarizes the risk level of some of the various syndromes - so, you know, just a reminder for everyone to check that out if you want to have more information about this and how this applies to the screening - so very helpful. What is the easiest mistake to make, and also maybe to avoid, when treating patients with paraneoplastic neurologic disorders?   Dr Zekeridou: That's a great question, actually. So, there are two things here. One is that we need to be thinking about paraneoplastic neurological syndromes, because if you don't think about them, then you don't look for them. So that's the one thing. So, patients that come with a subacute onset of neurological dysfunction - they have systemic features, or they are smokers, they have autoimmunity in the family (all those things) – like, we need to be thinking about paraneoplastic neurological syndromes. On the other side, we also see a little bit more of overdiagnosis that's coming in the later years. So, one of the things that we see a lot is that we kind of have difficulties with the interpretation of the neural antibodies - so, sometimes, we will get a neural antibody, and then it will not fit, but we will base our diagnosis on the neural antibody presence. And then, some neural antibodies are great - we don't really see false-positives - but some of them are not great and we do see false-positives. So, for me, the main thing that I would say is that we need to have a clinical suspicion - we're treating the patient and the clinical syndrome if it is compatible with a paraneoplastic neurological disorder, and then the neural antibodies are the ones that are going to help us, like, diagnose or point to a cancer - but we are really treating the patient. And then, if we give a treatment and it doesn't make sense how the patient evolves, we actually need to reassess the diagnosis, because we do have both overdiagnosis, but also we have underdiagnosed in patients that it's not suspected - so I think it's kind of the increased awareness that helps, but we also need to be going back always to the clinical manifestations of the patient.   Dr Grouse: Really great points to make, and thank you so much for that. What is the most common misconception you've encountered in treating patients with paraneoplastic disorders?   Dr Zekeridou: So, one of the things that we see a lot is that patients wait to be treated - even with high suspicion of paraneoplastic neurological syndromes - until we have the neural antibodies, and sometimes, if the neural antibodies are negative, we have patients that are not given a paraneoplastic neurological syndrome or autoimmune neurological syndrome diagnosis because of the negativity of the antibodies. So, for me, one of the main things is that the patients actually fit clinically with a paraneoplastic neurological syndrome - and there are scores that can help us, clinical manifestations that can actually help us make this diagnosis. We need to be looking for the cancer and treating them, regardless of the presence of the antibody. Some patients will not have the antibodies for weeks. The second aspect to this is that, often, we want to say, “Oh, it's a paraneoplastic neurological syndrome. They will treat the cancer and, like, that's the oncologist's job.” But, practically, I think that the neurologist will really need to be involved with this. I think the patients need treatment of the immune response and treatment of the tumor. So, I think we are part of the treatment team for these patients and it's not only the oncologists that are treating the tumor.   Dr Grouse: Where do you think the next big breakthrough in this area will be?   Dr Zekeridou: Where I hope it would be - and I'm hoping that it's actually what it is going to be – is, really, better understanding and treating the classic paraneoplastic neurological diseases, that they are T-cell mediated disorders that lead to neural cell distraction, and we don't have good treatments for these patients and we cannot get any improvement. So, there is a lot of research going on there. How can we prevent? How can we treat? But, I think that would be the next big milestone for us, because the antibody-mediated diseases - so we now have a lot of good treatments. Like NMDA-receptor encephalitis, AMPAR encephalitides - these antibody-mediated disorders, we have good treatments. The disorders that the antibodies are biomarkers  - and they are the cytotoxic diseases, the effectors of the autoimmunity - we don't. So, that's where I hope and think our breakthrough will be.   Dr Grouse: Definitely hoping to see more advancements in this area and already, I think, very quickly developing field. So, I wanted to talk a little bit more about you and what brought you to this area of neurology I think which most of us find to be a very fascinating field  that would love to hear more about what brought you to it. How did you become interested in this area of neurology?   Dr Zekeridou: I did my medical school in Greece. So, in Greece, towards the end of the sixth year, you need to decide what your specialty would be, and for the life of me, I could not decide between oncology and neurology - I was changing my mind all the time. And then, I decided that the diagnosis is more important to me in terms of a physician - that's why I went more with neurology and I was clear on my choice. So, practically, then, I went and did my residence in Switzerland, and something happened and I found myself in the outpatient autoimmune neurology multiple sclerosis clinic for a year, and it was evident to me that this is my passion. Like, the multiple sclerosis, I thought was a great disease, but it was the cases that they were not multiple sclerosis, that they were the ones that they were the most fascinating for me. So, then, I did my peripheral nerve year - so even more, it was clear for me that this is the immune system interactions, the cancer, and the neurological symptoms - that's what I wanted to do. And practically, I pursued a fellowship in Lyon in the French Reference Center for Paraneoplastic Diseases, and I was sold. There was nothing else for me. So, eventually I came here at Mayo (and then I stayed) - but it was very clear, even since the beginning - and I really found something that combined both of my passions even from medical school.   Dr Grouse: What are you most excited about in this field? And, specifically, you know, what might you impart to other trainees who are thinking about choosing this field for themselves?   Dr Zekeridou: So, I think that there are many things. So, autoimmune neurology or paraneoplastic neurological syndromes, they can affect every level of the neuraxis, so, practically, your clinician, that we see everything - we'll see central nervous system, peripheral nervous system, neuromuscular junction – so, that's actually very fascinating for me. The second part of it is that we have diseases that we can actually treat. We see differences in patients that we will intervene and we will really change their disease course. And the other thing for me is all the research that is ongoing. So, practically, the research in paraneoplastic syndromes or neurological immunity is directly translational to the patient - like, we have kind of a bed-to-bedside type of research that is going on. And basic research is important and there is a lot of advances, but you can see them directly, like, being translated in patients - so, essentially, the research is directly translational to clinic, and that makes it very exciting.   Dr Grouse: I think that your excitement about this field is very inspirational and will hopefully inspire many future trainees who are interested in this field. So, when you're not learning more about paraneoplastic syndromes and their treatment and diagnosis, what else do you like to do? Tell us something about your outside interests.   Dr Zekeridou: So, again, I come from a very diverse background and the way that I arrived in the states, but, I really like traveling. So, we would travel a lot lately. We travel more in Greece, because when you're coming from Greece and you're not living there, your summers are always there - but we try to explore different places there. And one of my main things and passions that I like is, essentially, cooking. So that relaxes me, that helps me - cooking and having friends over – so, that's my favorite thing of doing outside of work.   Dr Grouse: Well, I have to say it's hard right now to imagine anything more fun than traveling and enjoying good food and Greece. So, I think your hobby seems like one we can all get behind.   Dr Zekeridou: It's relaxing the mind.   Dr Grouse: Yes, yes. This has been a really great discussion on what I think is a very interesting area of neurology, and we really appreciate you taking the time to talk with us today.   Dr Zekeridou: Thank you so much for having me. It was great talking to you.   Dr Grouse: Again, today, I've been interviewing Dr Anastasia Zekeridou, whose article on classical paraneoplastic neurologic disorders appears in our most recent issue of Continuum on autoimmune neurology. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners so much for joining us today.   Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at Continpub.com/audioCME. Thank you for listening to Continuum Audio. Full transcript available at URL to come

Today on the Rarified Heir Podcast we are talking to Christopher Lewis, son of entertainer & human juggernaut, the one, the only, Jerry Lewis. Chris was kind enough to reach out to us via a mutual connection at the Library of Congress and was pretty terrific about answering all our questions, big and small about the man known as “The King of Comedy.” The impetus for our chat was Chris' book Jerry Lewis on Being a Person, a 300+ page book is packed with photos, ruminations, life lessons, antidotes and more. It's a wonderful look at a complex comedian, director, writer, producer, golfer and philanthropist. Chris talked to us about his father and was frank about why he looks at his father with “rose colored glasses,” his father's lust for life and everything in between. Somehow we get to a vast amount of information on “Le Roi du Crazy” as the French called him. Our discussion hits everything from his love of audio and video technology to just how much of the Jerry Lewis archive was delivered to the Library of Congress. We also spoke about culturally significant high points like his guest appearance on Pink Lady and Jeff ans Slapstick (of Another Kind). Along the way we get to talking about The Day the Clown Cried, an true art imitates life Rupert Pupkin stalking situation that had everyone in the family on edge, why handshake deals were so important to Jerry and what comedians made Jerry Lewis laugh. All you have to do is sit back and listen to this episode of the Rarified Heir Podcast. Take a listen.

In this episode of The Canadian Investor Podcast, we shift our focus from broad-based index funds to explore the world of sector-specific ETFs. While index funds provide a great foundation, they often concentrate on certain sectors more than others, potentially leaving gaps in your portfolio.  Join us as we break down the S&P 500 and S&P TSX sector weightings, highlighting areas where investors might be underexposed, such as real estate, utilities, materials, energy, and consumer staples. Drawing inspiration from John Templeton's timeless wisdom on diversification, we'll provide you with Canadian and US listed ETF ideas for each of these sectors. Additionally, we'll delve into Warren Buffett's insights on achieving impressive returns with a smaller investment pool and share five intriguing Canadian small-cap stocks that have recently caught our eye.   Ticker of stocks/ETF discussed: MDA, PSI, BDT, CVO, KITS, VGT, TEC, ZNQ, IYF, ZEB, VCR, XCD, VOX, COMM, IXJ, ZUH Check out our portfolio by going to Jointci.com Our Website Canadian Investor Podcast Network Twitter: @cdn_investing Simon's twitter: @Fiat_Iceberg Braden's twitter: @BradoCapital Dan's Twitter: @stocktrades_ca Want to learn more about Real Estate Investing? Check out the Canadian Real Estate Investor Podcast! Apple Podcast - The Canadian Real Estate Investor  Spotify - The Canadian Real Estate Investor  Web player - The Canadian Real Estate Investor Sign up for Finchat.io for free to get easy access to global stock coverage and powerful AI investing tools. Register for EQ Bank, the seamless digital banking experience with better rates and no nonsense.See omnystudio.com/listener for privacy information.

Keep, sell or loan out? Matt Davies-Adams is joined by Dom Fifield and Luke Bosher to take a deep dive into the Chelsea squad as we discuss the future of the current crop of players and their places at Stamford Bridge or elsewhere going forward. It's the small matter of the MDA derby on Saturday teatime as Mauricio Pochettino's side make the trip to Nottingham to face Forest! We look ahead to that one and ponder the motivation for both sides with Europe and Premier League safety potentially on the line. Then - Dom takes matters into his own hands with the quiz - and the shoe is on the other foot as Matt becomes a contestant... We'll be back on Monday to reflect on the trip to the City Ground - and look ahead to the penultimate game of the season at Brighton. HOST: Matt Davies-Adams WITH: Dom Fifield & Luke Bosher PRODUCER: Lucy Oliva Learn more about your ad choices. Visit megaphone.fm/adchoices

Keep, sell or loan out?Matt Davies-Adams is joined by Dom Fifield and Luke Bosher to take a deep dive into the Chelsea squad as we discuss the future of the current crop of players and their places at Stamford Bridge or elsewhere going forward.It's the small matter of the MDA derby on Saturday teatime as Mauricio Pochettino's side make the trip to Nottingham to face Forest! We look ahead to that one and ponder the motivation for both sides with Europe and Premier League safety potentially on the line.Then - Dom takes matters into his own hands with the quiz - and the shoe is on the other foot as Matt becomes a contestant...We'll be back on Monday to reflect on the trip to the City Ground - and look ahead to the penultimate game of the season at Brighton.HOST: Matt Davies-AdamsWITH: Dom Fifield & Luke BosherPRODUCER: Lucy Oliva Hosted on Acast. See acast.com/privacy for more information.

Goals, goals, goals and more goals! Matt Davies-Adams has The Athletic's Chelsea experts Simon Johnson and Liam Twomey alongside him to reflect on a fantastic Sunday of action for CFC & CFCW. We begin with a round up of the 5-0 thrashing of West Ham at Stamford Bridge - as Chalobah and Gallagher shone once more, Cucurella got his fans singing and European football suddenly started to look like a very real possibility... Then, remarkable scenes at Kingsmeadow for Emma Hayes' last home game in charge as they put EIGHT past Bristol City to take advantage of Man City's defeat by Arsenal earlier in the day. Jessy Parker Humphrey's captures the mood on a bonkers day in the WSL title race. We'll be back on Wednesday to look ahead to Saturday's trip to the City Ground in the MDA derby (coming a day early because a certain producer is off to Paris to see Taylor Swift...) HOST: Matt Davies-Adams WITH: Simon Johnson & Liam Twomey PRODUCER: Lucy Oliva Learn more about your ad choices. Visit megaphone.fm/adchoices

Goals, goals, goals and more goals!Matt Davies-Adams has The Athletic's Chelsea experts Simon Johnson and Liam Twomey alongside him to reflect on a fantastic Sunday of action for CFC & CFCW.We begin with a round up of the 5-0 thrashing of West Ham at Stamford Bridge - as Chalobah and Gallagher shone once more, Cucurella got his fans singing and European football suddenly started to look like a very real possibility...Then, remarkable scenes at Kingsmeadow for Emma Hayes' last home game in charge as they put EIGHT past Bristol City to take advantage of Man City's defeat by Arsenal earlier in the day. Jessy Parker Humphrey's captures the mood on a bonkers day in the WSL title race.We'll be back on Wednesday to look ahead to Saturday's trip to the City Ground in the MDA derby (coming a day early because a certain producer is off to Paris to see Taylor Swift...)HOST: Matt Davies-AdamsWITH: Simon Johnson & Liam TwomeyPRODUCER: Lucy Oliva Hosted on Acast. See acast.com/privacy for more information.

This week on Dopey! In a super special new Dopey! We are joined by one of the greatest Dopey storytellers in the history of the show! Louie Mandrapillias - the gay weed kingpin of Houston tells a Dopey story unlike all Dopey stories which starts innocently enough in Shreveport Louisiana and winds up in India smuggling heroin back to New York City up his butt in a dildo shaped  condom. There are too many incredible Dopey stories to ruin in this description! PLUS voicemails from Australia, a letter from prison and so much more in a super extra special new episode of the good old Dopey Show! NOTES! - MDA and studio 54 - speedballs - trafficking drugs from india - opium den - bhagwan compound - smuggling heroin in a condom - DEA search at the airport - projecting drug use onto random people when you're high - bolivian cocaine, getting caught - avoids jail time with nepotism - heroin from bangkok smuggling tek - HIV positive - spontaneous recovery awakening - LA AA scene

Max talks about the details of the crash of a TBM 960, N960LP, at Truckee, California last weekend. He also talks in detail about his factory tour last week of Robinson Helicopter. Weather at the time the pilot flew the approach was ½ mile visibility and snow with clouds scattered at 300 feet and overcast at 700 feet. However the approach minimums were 1 mile visibility and the MDA is 582 feet AGL. The pilot flew the instrument approach more or less successfully, though he descended more than 200 feet below the minimums, and he started his turn for the missed approach 1.3 miles beyond the missed approach point. While he flew the approach with the autopilot, he flew the missed approach by hand, and lost control. If you're getting value from this show, please support the show via PayPal, Venmo, the Cash app, Zelle or Patreon. Support the Show by buying a Lightspeed ANR Headsets Max has been using only Lightspeed headsets for nearly 25 years! I love their tradeup program that let's you trade in an older Lightspeed headset for a newer model. Start with one of the links below, and Lightspeed will pay a referral fee to support Aviation News Talk. Lightspeed Delta Zulu Headset $1199 Lightspeed Zulu 3 Headset $899Lightspeed Sierra Headset $699 My Review on the Lightspeed Delta Zulu Send us your feedback or comments via email If you have a question you'd like answered on the show, let listeners hear you ask the question, by recording your listener question using your phone. News Stories Committee Says Pilots Shouldn't Have To Report ‘Talk Therapy' Sessions Updated ACS/PTS Documents Available – Effective May 31, 2024 Cessna 172 damaged by jet blast Hartzell Aviation rolls out FAA Safety Tip videos How Sling Pilot Academy Made Their Trainer Whisper Icon Aircraft files for bankruptcy, seeks buyer American Airlines Pilot Arrested Before Flight for Suspected Intoxication FAA halts Sequim wing-walking flights, revokes owner's pilot license Mentioned on the Show Robinson Helicopter Company Factory Tour video #227 My Near-Fatal Icing Incident #233 What You Need to Know about Advisory Glide Slopes Truckee Airport Procedures and Noise Abatement Free Index to the first 282 episodes of Aviation New Talk So You Want To Learn to Fly or Buy a Cirrus seminars Online Version of the Seminar Coming Soon – Register for Notification Check out our recommended ADS-B receivers, and order one for yourself. Yes, we'll make a couple of dollars if you do. Get the Free Aviation News Talk app for iOS or Android. Check out Max's Online Courses: G1000 VFR, G1000 IFR, and Flying WAAS & GPS Approaches. Find them all at: https://www.pilotlearning.com/ Social Media Like Aviation News Talk podcast on Facebook Follow Max on Instagram Follow Max on Twitter Listen to all Aviation News Talk podcasts on YouTube or YouTube Premium "Go Around" song used by permission of Ken Dravis; you can buy his music at kendravis.com If you purchase a product through a link on our site, we may receive compensation.